Editorial Note: This post is by Lynne Millican, the founder of Lupron Victims Hub. Lupron is leuporelin – one of several Relins. Lynne’s story which dates from the late 1980s is still being repeated today with drugs like Goserelin – Zoladex.
This group of drugs can cause seriously bad outcomes for some women. But it can be hard to know at times whether the greater problems stem from greedy companies or cowboy doctors who dish these drugs out in huge doses for IVF related and other reasons and continue to do so even when things are going obviously wrong.
The start
I began Lupron – leuporelin – in January 1989. I was working as a registered nurse. I needed treatment for endometriosis and infertility.
I was prescribed daily Lupron injections, and was told that it was “safe and effective and had been used successfully throughout the world”. Within weeks of starting, I had severe hot flashes, insomnia and was in a “fog”, and for the first time in my career was placed out of work on temporary disability due to “intensive medical therapy, Lupron”.
I began almost immediately to experience severe and crushing bone pain– as if my bones were in a vice. My feet began to constantly ache and throb. I had GI problems – anorexia, nausea, vomiting, and bowel problems. There were other odd symptoms – such as tinglings that ran up one side of my spine to my entire scalp always only on one side at a time, numbness of my fingers and toes, abnormal heart beats and rapid heart rates, and bad headaches.
My doctor’s response
My ‘healthcare providers’ variously reassured me that these symptoms were normal and temporary, or coincidental, and “nothing to do with Lupron”, or viewed as hypochondriacal.
I was told “if you want IVF you must use Lupron”. In my fertility clinic’s 1990 brochure, Lupron “is only prescribed to persons with certain diagnosis” but in the 1991 brochure this became Lupron “is widely prescribed”. I would later learn that the Director of this fertility clinic was a lead Lupron investigator, a Lupron speaker and a Lupron opinion leader for TAP/Abbott Laboratories (now known as AbbVie).
In my case, Lupron suppressed my system so severely that I was unable to produce any eggs – and so several IVF cycles had to be cancelled due to “suppression from Lupron”. During these years, I used 9.5 months of daily Lupron. I was prescribed 1 mg/day – a total of 30 mgs each month … when men being giving Lupron for prostate cancer only got 7.5 mg per month.
Unable to work
From 1990-93, I was unable to work owing to physical complaints, tests, treatments and surgeries. The rest of the decade was a mix of inability to work part-time work, sick leave and permanent exhaustion. From 1999 I was again off work for two years. After I tried to return to part time work increased gastric problems, frequent hospitalizations and exhausted sick leave forced me into permanent disability retirement in 2003.
With each new symptom, I would say to the doctor “Is there any connection to my use of Lupron?” and the reply was always a “No, just coincidence”. I began a merry-go-round of doctors visits for a multitude of health problems. A year after stopping Lupron I still had bone pain, numbness, tingling, cardiac arrhythmias, spasms and twitchings of muscles, an adenoma (tumor) of the gallbladder and gastritis to name just a few.
Becoming an activist
Because of my experiences, in 1992 I co-drafted a Massachusetts bill that would have required fertility clinics to provide, among others, informed consent of the risks of Lupron. This bill died in committee in 1999 but all the testimonies are at “Mass. Bill & Millican Testimonies”, which reads as a chronology of the learning curve of the risks of Lupron and reproductive endocriminology.
My gastrointestinal problems progressed to GERD, duodenal ulcer and ultimately gastroparesis – ‘paralysis’ of the gut. Lupron has destroyed the neurological impulses in my GI tract. I have been hospitalized 60 times since 2003, when I had to retire on a disability from my nursing career. I have chronic lymphadenopathy of unknown etiology, constant joint pain and aching feet, severe osteoporosis, my dentist says my jaw is “dissolving”, episodic myalgias (muscle pain) and neuralgias (nerve pain), chronic fatigue, and difficulty with memory.
In the beginning I felt like a lone victim crying out in the wilderness. In 1992 I began to research Lupron in the Boston area medical libraries. Despite all treating physicians’ denial of a causal relationship to Lupron, and despite the fact that there were countless medical journal articles touting the wonderful effects of Lupron with many studies paid by TAP/Abbott, I was nonetheless finding disconcerting facts tucked here and there within published articles.
A most telling and validating find was the following statement: “Inclusion of patients with a poor response to GnRH analogue therapy has not always occurred in outcome analysis in the published literature.” (in Fertility & Sterility, 61:2; 404-6). Lupron is the most frequently prescribed GnRH analog.
Other nightmares
As the years went on, more and more women were complaining of serious post-Lupron health problems and now the internet has exploded with serious adverse health complaints post-Lupron. The nightmare stories I receive in my website’s mailbox are heart-wrenching.
Many of these victims suffer not just physical adverse events but mood disorders, anxiety, depression, psychosis, aggression, delusions, severe depression as well as suicidal ideation. There have been suicides reported to the FDA, and a homicide, although FDA’s databases contain no mention of this.
Thousands of people have petitioned Congress to investigate Lupron. Many times these ‘stories’ represent ruined health, lost career, disability, financial ruin and family devastation.
Here are a few of the emails I have had:
- Lynne- I am a 41 year old board certified family practitioner who has dealt with debilitating chronic illness since I was 20 yrs old. You know how the rest of this email will read – took Lupron – got sick and now my life is in ruin. The saddest part is until 1 wk ago when I came across your website I thought all my odd medical problems were all just coincidence!! That’s the horror of what has happened to me – is that I had NEVER put together the common thread of LUPRON! I thought Lupron was helping the FIVE times I have used it! ESPECIALLY because I am a physician. Yes I can get sick just like everyone else BUT you think I’d have put the pieces of the puzzle together BUT I trusted what was printed in Lupron’s inserts and studies! Mistake I’ll be paying for the rest of my life! … I had developed Inappropriate Sinus Tachycardia (heart rate stayed 120-150 24hrs/day 7 days/wk!) … Autonomic Dysautonomia … THREE 12-13 hour cardiac ablations … pacemaker … on strong pain rx for pain management for life. In 2002 I was total and permanently disabled … SEVERE sleep apnea: Obstructive and Central sleep apnea (again no good reason why my BRAIN is not giving signal to breathe??) … I continued to be in the hospital with bowel obstructions, severe pain limiting every move I made … nausea and vomiting, pain have gotten worse and I’ve now found out that I have GASTRIC PARESIS. … From what I have read, it sounds like so MANY corners were cut by FDA getting Lupron approved … but what a TRAGEDY that those cut corners have caused such huge damage and destruction in young women who had such bright futures – just like me! … I barely have energy to get out of bed most days … I would give anything just to have some quality of life again. … Something has to be done.
A psychologist emailed:
- … I couldn’t finish school for over 2 years after taking Lupron. I accrued tremendous debt. I almost lost my job. … I was on Lupron because I donated my eggs in grad school. I was so beautiful and energetic and happy. Then I could barely walk up stairs. It hyperstimulated my ovaries, my joints are in pain, I now have thyroid and eye disease and I’m overweight and look awful with bulging eyes despite healthy eating and exercising (the days I can manage). I do work but that is all I do. I can’t go out anymore as I don’t have the energy. It’s so obvious from the pictures – Me before Lupron and me after. Unrecognizable. If there’s anything that I wish, it would be to help inform other young women of the real side effects of this drug …
A 27 year old woman
- went on [Lupron] for 6 months [for endometriosis], went on suicide watch for the extreme depression among other side effects … I had coughed and threw out my back. Then a month or so later I sneezed and threw out my back … [then] I couldn’t move my legs I was in so much pain … MRI’s determined that the lower lumbar discs in my spine were all DEAD … slipped and one ruptured. … This is a lifelong back pain I experience day to day … have extreme constipation and bowel problems … [have to] retrain my muscles how to work in my lower digestive tract … I am facing a possible surgery to resect. … Please please help me! I don’t know where else to turn and what to do!
This reported death is not identified within the FDA’s Lupron AERS reports:
- I am at my wits end and do not know where to go from here. I am writing to you about my 27 year old daughter, Jana, who died in her sleep, on November 7, 2006, 21 days after getting an injection of Lupron. She had told me the night before that she didn’t feel right and that she was not going to take the rest of the shots. She also had gotten a rash on her chest. … Her cause of death is listed as “Undetermined Cause of Death. …” It is presumed this woman died of a lethal arrhythmia.
This reported death is not identified within the FDA’s Lupron AERS reports either:
- My 22 year old daughter died July 31, 2012. She had endometriosis and started on Lupron injections in May 2012. The first injection … she was not feeling well. By [the next] afternoon she was passing out every time she stood up. … The Lupron messed with her hypothalamus gland which messed with her pituitary gland which messed with her adrenal glands. Her glands were not making ACTH or Cortisol hormone. Her blood sugar kept dropping, her blood pressure would not stay up and she got sick easily. … I am devastated! Our family and friends are still in shock. I don’t understand why the doctors who are treating with Lupron do not know how dangerous it is, especially for people who may have compromised immune systems. … Please tell me what I can do to make a difference. No one should have to suffer a loss like this.
And just a selection of some of the other emails received:
- I was first given Lupron injections when I was on active duty in the Navy for endometriosis. … I had significant mental/emotional effects. I was suicidal. I was depressed and began to cut myself. I had never done this before. I was placed on all kinds of psychiatric medications. I ended up being medically discharged and 23 mental hospitalizations later given a mental diagnosis of Bi-polar disorder. I have no history of psychiatric conditions in my family. … I have been plagued with severe arthritis in 90% of my joints and neurological symptoms related to or very similar to MS. In the military you cannot refuse medical treatment. … I believe that Lupron injections may have caused my mental breakdown. Very shortly after I starting taking the Lupron injections I received a drastic change in my mental status. …. I really do think that there needs to be a formal investigation into the amount of women serving in the military that are forced to take Lupron injections. My quality of life has been very drastically effected by the use of this drug and the side effects.
- I was diagnosed with precocious puberty at the age of 6 … I was given monthly injections over the course of about 5 years. … I was diagnosed with depression at about 8 years of age, and it has gotten worse over the years, pain very bad in just about all my joints and I am only 23. I also get crippling migraines very often
- Five years after using Lupron in IVF with a well known doctor … I need help. I need my life back. It is so debilitating that I don’t see any future except this. … I was not warned about the potential lasting effects of this drug. … I am still extremely depressed, irritable, exhausted, experience aches and pains and live a life of seclusion. This is not the person I used to be.
- I was put on lupron depot for my endometriosis in July of 2011. I have now recently been diagnosed with carpel tunnel in both arms, hypothyroidism, and fibromyalgia – I did not have the pain of these syndromes before the injections. I was wondering if you knew of a good lawyer or any advice you might have for me because now I am disabled, going on catastrophic leave and running out of money for medical visits. I am at a loss. My obgyn repeatedly said that the side effects would go away and I would only experience menopause side effects. She kept telling me these problems had nothing to do with lupron and to see my regular doctor – I have gone from a five sport athlete to a 39 year old cripple. I need someone to help – to stick up for me – to stop this from happening to others. Thank you.
The list goes on..
I have folders stuffed with similar emails, covering the gamut of infants born post IVF/Lupron treatment with rare cancer, autism, seizures and brain tumors, and emails about children and adults with enlarged livers, Hashimoto’s thyroiditis, autoimmune arthritis, complaints of depression and memory loss, Guillian Barre, diabetes, psychotic episodes, Sjogrens syndrome, “parathyroid carcinoma”, as well as universal complaints of every possible variant of bone pain. The list does go on and noteworthy are the alarming numbers of young and middle-aged women who are now permanently disabled.
To read more ‘stories’, please see my 2009 plea to Deputy FDA Commissioner Sharfstein and also see my 2003 Congressional testimony which is on the Lupron Victims’ Hub (p.19 – section: ‘Examples of Iatrogenic Illnesses Induced By Exposure’).
In addition to Lupron victims’ personal devastation, what is the cost to Medicare? To Social Security? To society? To private insurers? In 2002, I asked BCBS to audit their costs 5 years before, and 5 years after a prescription of Lupron to no avail.
So, please consider the marginalized plight of the multitudes of disabled women (as well as the children and men), stated eloquently in the poem “Who Is This Woman – She’s You and Me”.
Melanie Lloyd says
I was given synarel (the spray version of Lupron) in my mid thirties after a laparoscopy for endometriosis. The doctor told me it would just be a way of suppressing any remaining endometrial material “just in case” she missed any. She said nothing about any risks.
After I finished the tree month course, I immediately began to gain weight and started getting dizzy. Eventually I was diagnosed with an autoimmune related thyroid disorder.
Around this time, my husband and I were trying to start a family, but each time I conceived, I lost the pregnancy. Usually in a week or two. Eventually, I saw a reproductive immunologist who explained that all of the symptoms were related. They were the result of an immune reaction to Lupron/Synarel and that he had seen this before. (We did end up adopting a wonderful little boy)
The next phase was severe arthritis and I began every other month infusions of Remicade to keep it under control. When it seemed to get better, my doctor reduced the frequency of my infusions and then I became very ill with what turned out to be Ulcerative Colitis (another autoimmune condition).
I’m 51 years old and I take so many medications to keep going. I don’t understand why most doctors are still unaware of the risks of taking Lupron. It was approved for men with cancer not for women with endometriosis.
It unconscionable that this has not been addressed.
lorri knowlton dunn says
I too am 51 years old. I was given injections of Lupron when I was around 37 for fertility problems. I was again given Lupron injections about 2 years ago to stop my periods. The side effects were weight gain, headaches, joint discomfort, etc., when I mentioned it to my doctor she said “well would you rather deal with that or have your periods, which were awful, and caused me to become anemic. I stopped taking the injections after one year. I love to exercise and love Zumba. However, I have slowed down a lot and thought it was my age, but my friends who are around the same age, seem fine. I started to notice that my legs hurt and my arms hurt, I can no longer open milk or rest comfortably. I went to the doctor and she stated that I possibly have RA and suggested I see another doctor. If I am walking I feel better, but once I sit down almost feel crippled trying to get back up. Is it possible that all of my discomfort is from all of the injections I received? Not all of us can be wrong.
GARRY says
Melanie is right in that lupron was designed for men with prostate cancer and not for women.
However apart from the obvious differences between the sexes,we suffer many of the effects of this drug together.So we all know how awful this drug can be,i write this to let men know that there are comments on here from men,so keep on reading the posts because many of the awful effects are felt by men and women together.
My best wishes to all on this great site Garry.
Garu says
I told my urologist that Lupron was killing me (after 2 shots equalling 7 months). Hot flashes, weight gain, loss of muscle, fatigue, etc. I had been scheduled for 2 years of this after radiation for prostate cancer diagnosis. He agreed to put me on bicaludamide and now I am coming back to normal. He also said the side effects many people suffer are serious and he said if he were in my position he would stop the Lupron too.
Mark says
That’s almost exactly my story as well. After being diagnosed with prostrate cancer, I was given Lupron depot 90 days prior to radiation treatment. 44 days of photon (high energy) therapy ensued. I thought that the radiation treatment was why I was so weak, even though I walk 10,000 steps per day. Without testosterone, you can’t build muscle mass! Duh! All in all I have been on Lupron for a year. I gained 25 pounds!! Now I can barely walk. My balance is fucked. I feel like I’m 80 years old. I’m afraid of falling and breaking a hip or worse. My chest hair is gone. Walking up a hill is impossible. This is clearly from Lupron. It’s poison. I’m in withdrawal from Lupron currently, and praying that I can get my life back. 110 days after my last 90 day injection, I developed hives that were insanely itchy. After 5 days of I think I’m ok. It was like the worst poison oak infection. I attribute it to Lupron because nothing else makes sense, except withdrawing from that toxin. Please consider my experience, anecdotal as it is. Lupron is pure hell
Mike says
I was given an infusion of Lipton prior to 33 treatments of radiation. I was told the shot would be effective for 6 months. Four months after the infusion, I began to severely experience the hot flashes and emotional roller coaster, and now, 6 months after the infusion, I have developed a severe rash accompanied by an insane itch. My GP and dermatologist have no answer aside from an assumption that it MAY be due to increase in my blood pressure medication. I now wonder if the Lupron could be the culprit and origin of the rash/itch albeit 5 mos after the injection.
Mel says
Read your story. Same! F the doctor who gives it! Can ruin your life, worse than a gun.
Needs BIG investigation. I had a few years ago. I hate to even say the name.
If I had the strength I would beat the shit out of the doctor to save someone else.
Yes, I am angry! Thanks for your message. Misery needs company. Sorry for us both. 🙏🏻😓😀
Eleanor Caputo says
Hi Mark, I’m so sorry for everything you’ve been through and for everything everybody’s been through on here. I have a question when you say it’s difficult to walk uphill are you saying because where your legs meet your torso is painful and walking up even a slight grade is difficult because you can’t swing your legs forward. I have incredible pain where my legs meet my torso and walking even on the slightest grade uphill is very difficult it takes a certain muscle to pull yourself up that slight Hill. Anyway I read all of these comments and I feel for everybody. In a way it’s a relief to see that other people are suffering just as bad unfortunately as I am but at least I know I’m not alone and it’s not all in my head.
Andrea says
Look into study’s of vitex , chastaberry herb ,
Also have a support group on FB, set up bk in 2017,
After loading with Lynne Millican , founder of luprin victim hub ,
Are welcome to join us , for support etc, there is a legal case , with regards to guys making due to the adverse effects from drug, not sure how far in process it is ,
Here is link of wish to join, if not Takecare
https://www.facebook.com/groups/1713185665638871/?ref=share
Tom says
That’s exactly my story! I’m exhausted walking 50yds! My balance is very difficult. I go to yoga twice a week to address these issues. I feel like I’m robbing Peter to pay Paul. I’m getting stronger and better balance, but it’s excruciating!! I have felt like I’m “babying” myself until I read these notes. Thank you!!! Tom
Eleanor Caputo says
I am now 60 years old but my nightmare started in 1984. I can not believe I have found this article after 37 years of suffering alone. Thank goodness for the internet. My story is nearly exactly the same as this one except that I was not seeking IVF. I had been attacked by a dog at work and before it was all said and done, he had ripped my abdomen open in the pelvis area. I remember the surgeon saying, I could have had a cesarian because the tear went all the way through. I really thought nothing of it until the nightmare of endometriosis and adhesions developed. I was put on Lupron for the endometriosis and to stop my periods. I was assured that it was safe and that it would help with the minstrel cycle affecting my endometrial growths. 4 surgeries later to remove adhesions and endometriosis, ending in a full hysterectomy 6 years later, no ovaries, no nothing. The Lupron cause so many symptoms, depression, hot flashes like I never experienced before, and pain all over my body, my health deteriorated continuously until I too was on complete disability. I always blamed the adhesions for everything. I was told It was all in my head. I was depressed and to take this drug and that drug. I have been on so many drugs, I wasn’t sure what was doing this to me. It has literally ruined my life. I have had no relationships for over 22 years. It ruined my marriage, I was never able to have children, and I have lived in incredible pain all my life, unable to be all I wanted to be in my life. It struck my life plans down and little by little I retreated into my own world. Last December, I beat breast cancer and was put on Anastrozole, a hormone blocker and for the third time in my life, I was thrust back into menopause. In three weeks, I was in so much pain, I could not walk, my abdomen is is terrible pain right now. I asked for and received testing and I have liver lesion and other issues. My intestines haven’t worked since 1984, my stomach has always bothered me, I have lived with severe abdominal pain every second of my life for 37 years. I was finally diagnosed with pernicious anemia. It is a B12 deficiency to do lack of intrinsic factor. It is something that takes decades to show itself, I believe Lupron killed my intrinsic factor 37 years ago and the reaction to Anastrozole has confirmed this for me. I got off anastrozole after 6 weeks. The depression it caused was unlike any sadness or depression I have ever felt before except when getting the Lupron shots. Anastrozole had the exact same effect on me as Lupron. And it only gave me a 4% better chance of reoccurring cancer. 4% is not worth it!!!! My story is much more in-depth but I would love to get involved with anything I can to make people aware of what Lupron and other hormone blockers can do to you. It literally stole my entire life! I am 60 years old and can no longer hike and take pictures as I am a photographer. I can not walk around the block. Grocery shopping in done in many small trips. I can hardly take care of myself. I am taking b12 injections every other day (EOD). Another thing that doctors know nothing about. And insurance companies will only approve one shot a month. any more than that is nearly impossible to get approved. So I buy mine from Canada and self inject. This has to be done for the rest of my life. Pernicious anemia caused by Lupron and anastrozole or any GnRh drugs!! That is my opinion having lived with this for 37 years. It took me 367 years to find my own answer and a tons of bullying by egotistical doctors. Telling me I am fat and poking their finger in my belly and it is all in my head, there is nothing wrong with you. I wouldn’t be fat if it wasn’t for being in and out of menopause three times and gabapentin and all the other drugs they shoved down my throat. I hope this story helps someone. I wish everyone who finds this article as life changing as I did. This article has confirmed my sanity and my self esteem and I now know I was right all these decades. I can die knowing that I finally have an answer for having missed out on my entire life. It took my entire life from me. I could have been so much more! Good luck to everyone. Believe in yourself. Don’t let doctors bully you and stand up for yourself no matter what. IT IS NOT ALL IN YOUR HEAD!!!
Holly says
Oh God I am so afraid. Finding this site tonight blew my mind and not in a good way. I am 47 and had a 3 month Lupron injection in early June – to shrink fibroids and stop bleeding pre hysterectomy (sometime in the fall) and I have been feeling like something is horribly wrong. Hence I am googling fibroids/lupron/anemia/etc and other unnerving symptoms and wound up here.
So I already had weird symptoms that I thought were from anemia(post an unexpected period beginning of May so heavy it was like a miscarriage and i ended up in ER.) Symptoms like dizziness, headaches, exhaustion, blurred vision, and tingling in my arms and lips. Plus the fibroid related symptoms – nasty uterine cramps, bowel isssues and pain, urinary issues, severe bloating.
I had to go on STD end of June as the cramps and especially the headaches/vision issues were making work impossible.
In the last month though, especially in the last week -things have really spiralled downward. Wicked migraines, super sensitive to light and sound – I put in earplugs during the day yesterday just around the house because the noise of the dog barking was making me want to bash my throbbing head against the wall. 😵 I am dizzy all the time, I can’t see straight – haven’t driven in weeks. Really frightening is the cognitive stuff – constant brain fog and I forget what I was taking about or where I was going when I leave the room for something. I was thinking what the hell is this, is this anemia or early Alzheimers!?? I feel like I’m mentally and physically moving through water or something I am so slow. And I am physically weak and exhausted out of all proportion. My low back kills, though I’ve had chronic back pain for years , now its intense. My muscles feel super heavy and I am so achy everywhere, I’m thinking is this just being almost 50 and alot less active since that trip to the er, or is this what fibromyalgia feels like?!?
I spend way more time in bed now than out.
Wtf is wrong with me???
Now I read all your comments and it seems pretty obvious I am on the same shitshow boat as all of you.F@$#!!!😯🥺😭😡
Please tell me I will get better after the Lupron wears off? Please tell me these are temporary side effects and not my life now??? 😢😢😢I’m petrified and I feel so alone in all this craziness happening to my body and my mind..
Please if you have anything to offer, email Holly at hollyws@shaw.caMuch love and peace to all you beautiful resilient souls.💗
Diana P says
Please email me back ELEANORE, IM IN Canada and May be able to help you with your shots. Dianap@live.ca
Lea says
I had Lipton injection 18 months and have joint pain ,muscle pain and has effected my speech which is slurred. MRI of brain reveals no stroke. Started shortly after LUPRON injection.
Eve Adams says
My 16 and continues to this day to have rage and explosive temper issues..uncontrollable at times and puzzling at best not only to me but to her..She ‘thinks something is wrong with her’..To me she is perfect(ley nuts) at times for sure but Lupron has been a probable cause of this change in her overall demenaur since she was on it..Fortunately no longer but lasting effects that were supposed to have no effect still linger after 3 years!
Jane Goodhope says
I had only ONE shot of 3.75mg Lupron, for a hysteroscopic myomectomy, and it destroyed my abdominal wall. Lupron causes severe hernias, even in fetuses. This injury is documented in the Physicians Desk Reference but, like many of the warnings, appears only under the dosage for men. I was very fit, in great health, and had never weighed over 105 pounds in my life nor been pregnant, yet I was left with a severely distended abdomen which resembled a second trimester pregnancy. The injury is not reversible. I had two major abdominoplasties, which are not covered by insurance, including an analogous skin graft on my abdominal wall in an attempt to reinforce it. I have two feet of scars and approximately $50,000 in medical bills. I found several other women with the same injury, none of whom recovered. I would much rather have lived with the small, benign submucosal fibroid I had, especially given my age. Lupron has changed my life forever. I cannot sign my real name to this because I would never get a job again if employers find out I have an injury which requires major surgeries. But do a little digging and you can find out who I am. GET THIS DRUG OFF THE MARKET, IT DESTROYS LIVES. THE FDA IS CORRUPT.
Samjhana says
I am 36 years old. I am going to donate oven to one of my friend and not I am reading all these comments and it is already making me disable, what should I be doing? I will have to take Lupron for 20 days 10unit per day. What is the another way for this donation?
Help me please.
ExperiencedDonor says
Samjhana,
I have donated 5 times successfully and only one had Lupron. I am not on a 6th with Lupron and I am being told I am ovulating when I am on my period… Something is wrong with this… my first cycle that used Lupron also was weird in comparison then those which only used Menupor follustim and trigger shot only. However, when I used Lupron I apparently had more eggs so I am being asked to do this with Lupron because the DR is greedy.
Karin says
Hello Jane,
I think I have the same problem. After my Zoladex (=Lupron) injection (and removal of my uterus and large fibroid, 4 years ago) my abdomen is larger the ever. Flat in the morning and huge in the afternoon. I never had this problem before and I lost a 13 cm fibroid and I lost a lot of weight. I’am not sure if Zoladex did this but I think so. Can you explain how it causes hernia’s? And how do you know if you have this?
Kind Regards,
Karin
Eleanor Caputo says
I too have a bloated and distended abdomen. Mornings it’s is flatter, by afternoon I can’t eat me pants and my Aldine is extremely painful to bend. And my legs hurt. So many other symptoms. Bowel problems, Interstitial cystitis, autoimmune issues and so much more. It’s been years. I used to hike and be very active.
Slowly but surely I became disabled. Today, I can hardly leave my house.
Daniel Schiappa says
I was treated with 3 Lupron 3 month doses for 9 months after having brachytherapy for prostate cancer. I had weight gain, burning urination, loss of memory and some gynecomastia but the worst part was about a month after stopping Lupron I flew out to LA to visit my sons, after getting off the plane I felt as if I was being pumped up with air as my stomach swelled up and I started sweating profusely. I also ended up with a severely distended abdomen which resembles a second trimester pregnancy just as you did! I was never overweight my whole life and now I have to deal with this huge stomach! I tried to diet and exercise to no avail. My urologist says it isn’t the Lupron but the change in my hormones because of my age being over 65 I don’t burn calories as fast. I had hormones checked and they are normal for my age. I had reached a dead end until I read your story. They never said my abdominal wall had ruptured as you had stated happened to you. I am going back to the doctor and ask why this was overlooked! Thankyou!
Russell Spataro says
I am 68. Had two three month lupron shots for prostate cancer. Doctor wanted me to have six more over two years. I refused. Six those shots I have a large hernia in my stomach, cannot lose weight even if I starve myself, degeneration of my spine, chronic pain, stiffness all over, inability to concentrate, no interest in sex, my testoserone levels are 80, normal is 300 to 800, mood swings and I feel like I have a severe case of the flu almost everyday. The only lupron side effect that has gone away is the freezing one minute then sweating the next. I went to a pain doctor for the severe back pain. I have to take opiates every day just to function. With so many people experiencing so many terrible side effects from lupron, I can’t believe a lawsuit hasn’t been filed against Abbott.
Alex says
I am truly sorry that you had to go through that. I mean, the side effects of Lupron can be truly awful. But I don’t think it should be removed, people should just be made aware of them before getting a shot. This thing saves lives, it helps treat prostate cancer, and it’s an excellent blocker for transgender youth. I myself, am transgender and I’ve had two shots of Lupron, the stuff makes me feel so much more relieved in my own body. Knowing that my puberty has been stopped just makes me so much happier and lets me worry about one less thing. Before I got my shot, my endocrinologist ran through all the risks with me and made sure I was aware of what could happen. Again, I am so sorry that you had to go through that, but I don’t think removal is the answer
Mom says
Absolutely disagree with you. This poison should have been pulled off the shelf 25 years ago. These side effects are severe and life long. Meaning they will never go away or be cured. Blocking your system is not the answer here and not with this drug. You are young right now but I promise you will regret this drug choice forever. Best of luck to you sweet child may god be with you to protect you always. Xoxox concerned mom
Regina says
Praying they cannot dismiss us forever! They destroyed our lives, kicked us to the curb to fend for ourselves…..many of us became bankrupt some on the verge of homelessness all for their GREED! Surely the multi-billion dollar pharmaceutical company can ensure we are able to provide for our health and alternative therapies for the rest of our lives considering? Let’s get this deadly drug off the market once and for all. If you have been damaged by Lupron please post your story here, My story: [http://www.lupronsideeffects.net/reginas-story/]
Randy Maddy says
67 yrs old diagnosed prostate cancer. Opted for radiation. Dr says got to have lupron shot to make this work effectively. Instead of 3 or four months shot, he demanded I have the six mo shot even though I resisted because I had read up on some of the side effects. I explained my fears. To no avail!! You must have this!! I finally agreed now only 25 days into it I have muscle and joint aches, severe dizziness, bowel problems, either constipation or diarrhea, anxiety, insomnia, fatigue and weakness. The hot flashes are the least of it. I was told hot flashes would be the only side effects I would have!! Oh yes, I forgot to mention sex with my beautiful understanding wife is out of the question. That in itself is enuff to stop this drug!!! Quality of life was never brought up. Only the outcome on paper. I will never trust a Dr again as long as I live. There were no warnings! Just take it! It’s best for you this drug is a damn poison!! And I can’t believe there have not been enough lawsuits to get this stuff off the market. Are patients not bringing suit???
Kenny says
Does anyone know of any physicians that have backed up the theory that lupron will destroy lives and leave a person permanently disabled? My wife was administered the drug multiple times (2 IVF cycles, and one to control endo).. Too make a long story short, she has since been diagnosed with over a dozen serious diseases and illnesses, some of her symptoms are still undiagnosed. She was a healthy professional just 3 years ago, and is now immobile, disable, and in severe pain every day! Her primary doctor is convinced the lupron is the culprit, but he wants to speak with another physician that is familiar with the long lasting side effects of lupron. So hopefully there is another doctor out there that can help him help her! I am just heartbroken to watch my 35yr old wife and high school sweetheart deteriorate more and more each day without any of this making sense!
Jennifer says
Hi Kenny did your wife find a doctor. I have several issues as well and at Mayo currently after three IVF treatments with Lupron and other IVF medications. Trying to find a doctor that is experienced with the long term aftermath of these medications. Thanks.
Karon says
Hi Jennifer. I hope you have had success at Mayo or finding any doctors for this horrible drug. I am going through this nightmare with my 25 year old daughter. We are acheduling a visit to Mayo and I am hoping you could share any information you can. It is extremely difficult to find any answers or direction and we would be so grateful for any insight you could share. Thank you. Karon
Jill says
I read your story about your wife and long term side effects of Lupron. I am also a severe sufferer.
I’m curious is you have ever found a Dr. that has looked into and treat long term side effects of this horrid drug?
If so could you please email me the information.
Thank you,
Jill M
Larry says
Hi Kenny;
Sorry to hear your story. Appears there are many such stories! I see this site consists of mostly women. Believe me, males are silent victums also.
I’m a male who was diagnosed with prostate cancer, over 6 yrs ago now. I was told I had no other choice except to get Lupron injections every month plus multiple radiation treatments or the cancer would kill me!…..re. radiation treatments, almost 200 treatments in the course of a short period of time. Interestingly, I became gravely ill after my first Lupron injection, before the radiation treatments & this illness never disappated. The oncologist dismissed my concerns as me being a “difficult patient”
At the time, I was extremely ill (from what I thought was from the radiation treatments and cancer) But I know differently now, it was from the Lupron in conjunction with the rad.treatment) The oncologist treating me, convinced me it was the cancer that was making me sick; not the Lupron treatments. This didn’t seem accurate, because I felt relatively well before the Lupron; but why would he lie to me or distort the truth?
During this time period, 5 + yrs. ago, I was a caregiver for my dear sweet Mother. I was so sick (from what I know now was the Lupron) I did a very poor job looking after her needs & keeping her safe. ….I allowed her primary care Doc. to enter her into Hospice, although Mum was relatively well; ambulitory, on her own & was enjoying her life as much as a ninety yr. old woman could.
Although I probably cannot blame the Lupron 100%?? it was such a contributor, that I was too ill & “fogged” to carry out my responsibilities as her Son & P.O.A. for her healthcare. And there was no one else around in my family to help. While this situation re. my Mother’s care may appear to be an entirely different subject, the connection to Lupron injections is unmistakable!
I was so fogged & ill that I allowed my beautiful Mother die a torturous death at the hands of that hospice & their special version of “nurse Rachet” & Dr. Menguler <—spelling? Of course I'm suffering from the physical aftermath of the cancer treatments (ie Lupron etc.) apparantly as much so as from the cancer; I'm in stage 4 cancer now & have been for over four yrs. now…..As one can imagine, my GUILT over my Mother's killing (it actually was that….murder for profit)….murdering a beautiful gentle soul in the most cruel & agonizing fashion, via. use of morphine. (starvation & dehydration) It took the hospice nurses over 14 days to kill her, becuse she was basically healthy. They were apparantly getting nervious, because it took them so long to kill her! They had to justify to the state & federal regulators that she was terminally ill, a condition they had to meet for her to be a hospice patient {she truley was not even close to being terminally ill)….Unfortunately, I learned how these "rogue hospices" worked all too late, after my mother's death. God bless Mum.
The reason I'm mentioning this is I truly believe I wouldn't be going through this private 'hell on earth' now & back then, if it were not for the Lupron, & other similar hormone theraphies I went through. My body & mind are RUINED!
Sincerely, Larry S.
laura says
I wish more men would come forward.
Dave says
My father was on Lupron to treat prostate cancer. His mood changed dramatically for the worse in that short time (1 year). He also suffered from frequent urinary tract blockage which we thought was a side effect of the radiation treatment, but I understand now that it is also a side effect of Lupron. He took his own life two weeks ago.
Stacey Wright says
Dave,
I just wanted to say how sorry I am about your father. Lupron needs to be taken off the market.
Blessings to you going forward.
Stacey
garry says
I completely agree Laura,men do not seem as forthcoming as women on matters of health.
All i was told before my first shot was that i would not want sex.That bit was spot on no sex now in nearly 4 years.My wife and i had a great relationship,that is now no more,not even with pills.
What i do have are anxiety,depression,headaches,tinnitus,shoulders that grind,huge round my middle[i eat very well mostly veggies]boobs with lumps in,muscle and joint aches,high cholesterol,shrunken nuts[from ping pong balls to small marbles].It is life Jim but not as i knew it.[Star Trek]
I was stage 3 with no spread,lupron did lower my psa to 0.21 at last test,i had 6,shots 3 month each plus 37 radiotherapy sessions.I have not had a shot for more than 2 years so i am not hopeful that things will improve now.
Best wishes to all on this great site Garry.
Mel says
I felt like a man until I took that nasty “Lupron”!
Then I was man enough to do what I feel like doing to
the Doctor who injected me.
The man (Doctor) should be in jail or the boxing ring getting his being punched out.
Unconscionable!
Thank you – Mel – 🙏🏻😓😃
Victor Nunez says
I had prostate cancer since 2013. After radiation I was put on Lupron (generic form) and Aberaterone. Iv’e had about 4 years of 3 month injections of Lupron . My last injection into my right upper buttock region has resulted in severe pain to my hip, calf, and ankle parts of the right leg. I went to the pain clinic. They said I needed an MRI to try to determine the cause. My Primary Care Physician Assistant gave me a muscle relaxer which didn’t relieve the pain. The pain clinic gave me Gabapentine for the pain thinking as I had that the nurse gave me the injection into a nerve resulting in my pain. The medicine didn’t relieve my pain.After doing research I think it is the Lupron that has finally built up in my right leg that is causing severe pain when I move my right leg. I’m waiting on an MRI to be taken of my right leg. Doctors need to be informed that Lupron can be poison to the body if not closely monitored for symptoms of severe Lupron side effects.
laura says
I wish more men would come forward. There has been a lawsuit I’m the pipeline for nearly 10 years. If more men came forward with their Lupton experience, I think it would give it more credence. I fear that we sound like a bunch of unstable PMS women, despite the fact that many of us no longer have our ovaries anymore. My life has been a nightmare since the age of 38 and I am convinced Lupron is the cause.
Michelle says
I can’t say what caused my problems, but back in August of 2014 I began Lupron injections through December of 2014. By the 22nd of January 2015 I was informed that I needed a hysterectomy. (February 2, 2015.) The hot flashes and insomnia aweful! I was always a very upbeat and on the go worker and Mom. My life has been deteriorating since. My bowels no longer work properly, suffer from anxiety and depression. They can’t find anything but IBS. I have severe pain for days after a BM and going feels like I’m being tore apart inside. I take a slew of medication that seemed to help a bit for a couple months. Now constant abdominal pain. I’ve changed my diet, and lost my job due to how many bad days I have. I go to U of M for special doctors. I’ve had 2 laperscopy surgeries and 3 colonoscopies within this last year. I want my life back! I want my son to have his Mom back. I cry because I can’t run around with him. I don’t know if those injections are the cause of this awful downward spiral. I can say never in my life have I had any of these problems. I’m 36 and should be full of life! I pray for answers!
Tera says
I’ve had 5 pelvic procedures for endo and wound up having a radical hysterectomy, oopherectomy, and appendectomy at age 33. When I started having severe, unmanageable pelvic pain during periods, my obgyn suspected endo and started Lupron in 2012. I’ve done several courses of the drug and had multiple surgeries- just so I can play with my 3 year old son. Nothing ever worked and now I’m worse than ever. I sleep up to 18 hours a day, but sometimes only sleep 2 hours. I’m in pain constantly, I have brain fog, dizziness, IBS, vitamin d deficiency, joint pain, chest pain, high cholesterol, and depression. I’ve seen dozens of doctors and specialists, tried nearly every treatment: drugs, physical therapy, cpap, chiropractic care, accupuncture. I’ve had tests for Lyme, Mono, Narcolepsy, thyroid disease, colonoscopies, endoscopies, scans on my thyroid, the list goes on and on. My disability got denied as they couldn’t find a diagnosis, and I’m not sure how much longer I can fight to keep working. I take 7 medications a day, minimum, and they only keep me semi-functional 4-5 days a week. I don’t know what else to do. All the doctors seem clueless as to how to improve my quality of life.
katherine davies says
I was seriously ill in 2015. I started suffering from excruciating pelvic pain, bloating, unable to eat, right sided low back pain, the list goes on. I was initially diagnosed with ovarian cancer, because of my symptoms. Scans showed a large ovarian mass. I was operated on and 7 cysts were removed. The laparoscopy was actually successful, even though one of the cysts was said to be [important]. I was diagnosed with severe endometriosis and told to have Prostap. which is Lupron. I had a feeling it was going to be a big mistake. And i was right. Never should have had that stupid injection. Straight into false menopause with ecery known symptom in the book. But the alarming symptoms of spine pain and severe joint pain were not what i expected. I feel like i have aged rapidly from being a very flexible person, to bone pain joint stiffness, difficulty walking and climbing stairs, I have felt like my body has not returned to normal. Not even 50%. I have now got sciatica in my hips, Crunching and grinding in my neck. I have numbness and tingling in my left arm, and pins and needles in both. I cannot straighten up when i bend over. I have problems with my knees. I feel like i am constantly struggling to keep myself going. Taking every vitamin known to man. Some days are good, other days i am asllep most of the time. I recently had a cervical spine x ray done, and blood tests to check for thyroid and othe nastys. I have all the symptoms of an underactive thyroid. and cervical spondylosis. With cubital tunnel syndrome. I have gained inexplicable amounts of weight, which i cannot shift. I am eating less than my daugther, who is 10. I cannot work, I cannot drive. I am unable to do most things due to these nasty symptoms. It has been a year since the lupron. There are so mant other symptoms i could go on,, but i wont. All i can come up with is that lupron interferes with the pituitary gland and shuts it down. The pituitary gland is the messenger for hormones and especially the thyroid. If you are buggered up and the pituitary gland cannot return to normal, then you will have all these health problems. Ironically i do not have so much pelvic pain from the endometriosis, but my abdomen is still like a balloon, i am 2 stone overweight, I have pretty alarming symptoms of everything ha ha and i am completely knackered up. The really hilarious thing is when you see an 80 year old woman and you feel jealous because she is more mobile than you are at 40. Good luck with lupron. I regret the second that nurse jabbed me in the thigh. Read about it before you decide. I was vulnerable and desperate for a miracle. But this drug is dangerous.
Tabitha says
I have just had an mri with and without contrast for exact symptoms except for weight gain. I have had extreme weight loss and im continuing to lose weight and im only 130lbs. I was sent home said mri was fine. The next day cdc took a second look at my mri and said they saw possible infectious disease of the spine. Ive been on lupron for 6+ years. I am permanently disabled and the health issues keep piling on. Im trying to get appointment made to figure out what cdc saw exactly in my spine and what happens next. Im a 40 year old female and i feel like im slowly and painfully dying. For years ive been told its all in my head.
Janet says
My husband had prostate cancer. During the time of diagnosis, they gave him a 6 month shot of lupron to contain cancer in his prostate before he could get it removed, which we had decided to do, versus radiation. There was no mention of side effects. During the time before his surgery, I noticed how tired he was compared to before. We just assumed it was because of the prostate. He had the surgery and things have gone down hill. His joints hurt, he still has a catheter for 8 weeks now because the inside of him has not healed like it should have. We just now found out he has Lupus! Fatigue, joint pain on feet, wrist, and knees, and is very weak. I am convinced the Lupron brought it on. He was fine before the shot! Lupron and Lupus sound very much like the same don’t they?
Andy says
I am 67 and have had BPH (benign swollen prostate) for over 15 years. I did little but manage it on my own because I was busy with two older brothers dying of cancer and also my mother who developed shingles. I took care of Rick full time for 2 years and after he was gone, Mom got shingles and that was another 2 years of nightmare for both of us.
Like Larry, I have terrible guilt over how I didn’t see what was happening once Mom got into a nursing home. The didn’t tie her shoe laces properly, I don’t know HOW many times. Complaints to management and staff went unheeded. I was told to stop being such a “momma’s boy” Mom finally had a fall and went in for hip surgery. She was 91. She had a reaction to the anesthesia and came to in a terrible state, thrashing about, calling out my name, making the sign of the cross. She couldn’t open her eyes nor respond in conversation. No one in that hospital offered me an explanation, nor what the prognosis was. At one point, I found a nurse squirting water into my Mom’s mouth with a syringe. My Mom would say, stop, choke. I told the nurse that I can’t swallow when on my back even if I saw it coming. Her reply was, some can, some can’t. Next thing I know they have her in intensive care with pneumonia. One week of hell on a lung machine and tube in her stomach. On his last day, (one week shift) the doctor tells me that he doesn’t think that she ever had pneumonia.
I was so stupid, blind and trusting I want to kill something.
But this is about Lupron. FINALLY, I’m scheduled for a green laser TURP. The Urologist is in another city, and he had his nurse give me the shot, in his office. Not knowing better, I thought that this was part of the TURP procedure. It is most dependent cancer. Why he gave it to me for BPH is still a mystery to me despite much, after the fact, research. He did say that he doesn’t give it often but,,, and he trailed off. He said it so casually, as if it were a flu shot. But we may all know now, even a flu shot can be dangerous.
So here it is, 6 weeks in from a 3 months shot, I have my TURP done and I feel horrible. WEAK with severe fatigue. Most of the references say that any side effects will dissipate in time. And now, I find myself here extremely concerned that I will have chronic fatigue for the rest of my life.
Most men that get Lupron are given a 2 year reprieve on their aggressive cancer. I can only imagine that being tired all the time is a better option than flat put dying. Or is it? It almost seems like they want to kill us, “the useless eaters” but they want to make as much money as possible on the way.
I’m not religious but I wish I was, knowing that there is a hot hell waiting for these people. My story is much more complicated and painful but that’s enough. YANA,,,, You Are Not Alone.
Jim P. says
Larry:
Not all, but too many oncologist and urologist discard common sense when it comes to patient health: I was feeling great in the late autumn of 2015, but after my physical my elevated PSA alarmed my urologist so much he rushed to get a biopsy, which he says, out of 12 biopsies, 11 was cancerous.
Okay keep in mind all of my life I have lived without a problem with an elevated PSA. And PSA are hardly reconized by the USPTF but my urologist had not seen the memo. So with reluctance I started lupron injections, which I now think was the worse decision I have made regarding my health. I received 3 injection but I refused a 4th in December of 2016. Because I am not myself, it is been nearly 10 months since I received my last injection but I am still experiencing serious health issues. Last December tachycardia, along with a delayed-like heartbeat seems to come randomly, and when this happens it scares the hell out of me. My hot flashes are almost gone, but I still have a rash which stays with me between my buttocks, and on the insides of my feet. I am also sleeping better but my heartbeats have not improved.
I will say this, I do not think this drug or any drug that is as detrimental as lupron should be prescribed. I have argued this point: that senior citizens, which I am, I will turn 79 in August, which makes my point even stronger: if one years clearly are less to live treating them with drugs that has severe side effects have to be given serious thought. And I think all docs need to use their common sense.
laura says
Oops! I pressed PUBLISH prematurely. Why did you provide this link? To offer more testimonies from male victims of Lupron and/or encourage victims to secure an attorney using that site?
Lou says
Lupron is a monstrous drug pushed hard by urologists, largely bc it has a $2,000 price tag for the the 3/mo version, and bc it does cause an immediate drop in a man’s psa, the test for prostate cancer cells. Trouble is, it only detects a certain kind of prostate cancer cell, leaving the others to continue doubling. The patient is misled by the low psa.
But by far the bigger trouble is that Lupron throws one’s body, brain, and spirit into a tailspin that the person may, or may not, recover from.
It would be ideal if Takeda labs of Japan would share what it does know, and provide insight instead of us tryng to compare notes. Unfortuneatly, Takeda’s silence and it’s money arrangements with doctors is not reassuring. Until more is shared, no one should take this drug for anything.
Thank you for this blog. it is much needed.,
Steve Boucher says
Hi Lou!
Thank you for sharing your thoughts.
I had my prostate removed on 8/3/16. Prior to the surgery my psa was 48. A couple of weeks later, it went down to 3.6.
My doctor(urologist) wants to administer a “Lupron” shot up my ass on November 15th and wants me to have additional shots every three to four months.
I am confused on what to do!\
Please advise, if you can.
Steve Bouchier
mike sisk says
Lupton is living hell
David Sloane says
Run!
I have stage four prostrate cancer. The tumor exploded out the side of my prostrate. My hip lymph nodes got infected and the cancer went to my bones.
My urologist felt it was best to not remove my prostrate so that what life I have left would be as best quality as possible.
He recommended the shot of Lupron.
Being frightened my wife and I accepted his advice and I got the shot in my buttocks.
Almost immediately I got hot flashes, dropped in weight (from 200 down to 167), nausea, fatigue, stomach upset, dry skin, my hair greyed, feeling “off,” and grew man boobs.
I also have thrown up quite a few times and experienced a loss of appetite.
The interesting thing is none of this was happening to me prior to this drug.
So I have declined the three month re-up of the drug.
I was managing the cancer with lots of green juicing and salads and fruits along with RSO oil.
The stomach issues made it hard to hold anything down.
It’s been 4 months now since that injection and the symptoms are still with me.
Of course your mind wonders what the heck is going on. Am I being affected by the cancer or is it the Lupron?
My hunch or sense is that all of it has been the Lupron initially. Kind of like a “gateway drug” for Chemo.
I declined chemo. I am thinking that most people will not realize that it is the Lupron and not the cancer that is making all of the side effects and will be frightened into going for the profitable to the medical industry chemo.
Dunno…but it does make sense to me.
I can’t wait for the Lupron to exit my system.
Don’t get me wrong, I am seeing my primary care doctor who is against messing with one’s hormones.
There are so many people who are getting cured of cancer by their own efforts which you can find by searching the web or YouTube.
Most are diet related. Like avoidance of all processed foods and eating more plant based foods etc.
I was so glad to come across this wonderful website. If enough of us tell our experience at least the public will be better informed.
I don’t think the Lupron will go away but at least this information is out there for people to come across like I have.
Do look up Rick Simpson Oil folks. It has worked for so many cancer patients.
God bless everyone who is struggling with the Lupron issues.
Barbara Ann Bittinger says
Lou and everyone, THE FDA NEEDS TO BE BOMBARDED WITH ALL THE PROBLEMS WE ARE ALL HAVING DUE TO LUPRON. A MINIMAL AMT OF PEOPLE CALL AND COMPLAIN ABOUT SYMPTOMS, DUE TO LUPRON, OR SO I’VE READ. HOWEVER , U OFTEN SEE NEW DRUGS ON TV ,
THAT ARE BEING PULLED, AND CLASS ACTION LAWSUITS ARE ENCOURAGED , I KNOW MANY OF THESE DRUGS DON’T HAVE THE BIG NUMBER OF THOSE SERIOUSLYAFFECTED LIKE LUPRON VICTIMS . SO CALL AWAY PEOPLE. I THINK THERE’S A HUGE COVER UP. THERE ARE GAG ORDERS FROM OLD LAWSUITS THAT DON’T ALLOW, WHAT THEY KNOW ABOUT LUPRON TO BE RELEASED. IF THIS HAD BEEN ADDRESSED INITIALLY, MYSELF AND MANY OF U WOULD BE LIVING WITHOUT IT’S DEVASTATING AFFECTS .BECAUSE IT WOULD HAVE BEEN BANNED. IT MAKES OVER A BILLION DOLLARS A YEAR. WITH ALL OUR CIMPLAINTS AND THERE ARE THOUSANDS, HOW COME THERE IS NO CLASS ACTION LAWSUITS? IT DOESN’T MAKE SENSE. PEOPLE ONCE ACTIVE, AND ESSENTIALLY HEALTHY ARE BEING SERIOUSLY DISABLED , HEALTH AND LIVES DESTROYED ,AND EQUIVALENT TO A 90 YR OLD, RIGHT AFTER TAKING LUPRON. THEN A CASCADE OF SERIOUS HEALTH PROBLEMS DEVELOP ONE RIGHT AFTER ANOTHER, WITHING A FEW YRS. IRONICALLY, MANY OF THE HEALTH PROBLEMS ARE COMMON AMONGST US ALL, THAT RECEIVED LUPRON. THEY WANT TO TELL US IT’S NOT LUPRON. BULLSHIT!
Barb Bittinger says
Hi, Kenny my heart goes out to ur wife and family. I was 47 and a registered nurse and a hard core athlete. I never recovered after lupron. I’m equivalent to an elderly person. I especially feel sorry for those so young with little ones. It seems every couple wks or mos I’m diagnosed with a new illness. In a short period of time I developed three hereditary diseases that my mom got in her 70s. It ages one drastically. I got those diseases at 50, twenty some yrs earlier. One doctor that the courts put a gag on his notes was a gyne names Redwine, he may be helpful. He was brave and had his patient’s best interests at heart., many are liars and got kickbacks. You may want to search for a former doctor that testified that lupron was poison, he was a former medical director of the FDA, his name is something like John Gueriguian. That drug makes big pharm over a billion dollars a year. I’m interested in justice for all, please contact me u make any headway. I can believe decades have passed and nothing is being done. I’ve learned recently, many new drugs made from some of the derivatives is on the market disguised by different names.God bless.
Joan Lewis says
Please contact me through my email.. My daughter, a critical care nurse, would like to speak with you. She’s been disabled from Lupron since 2004. I’m her mother her caretaker and we definitely have some news for you please contact me.
Tabitha says
Hello, I just turned 40 and just started taking Lupron Injections. Please email me about your daughter. My bones and muscles hurt so bad and they just tell me that it’s just a side effect of the medicine. It does scare me a bit as I have young children and want to be able to care for them to the fullest.
al couture says
hi joan– my husband’s mind was affected (they say hospital dementia) after 5 shots of Lupron. does your daughter have any news that would be useful? rita
Lynette Henk says
I was treated with lupron for endometriosis and fibroids. Within one day I was having chest pain, high blood pressure and starting to feel ill. The bone pain was so severe in my legs that I would be curled up in the fetal position. I went from a highly successful career oriented person with a fortune 500 company to someone who could hardly move. To this day, no one believes that my osteoporosis, severe bone pain, fibromyalgia, chronic fatigue, bladder pain have anything to do with lupron even though the symptoms started right after my first shot. I immediately contacted my OB/GYN and he said it was a “Coincidence” and that Lupron was safe and had nothing to do with my symptoms. Someone look at this before even more women are disabled by Lupron.
Evelyn says
I’m on lupron and my blood pressure is up, I have chest pains as well. Did your blood pressure go back to normal once you discontinued lupron?
Nora says
Dear Lynette,
I am sorry to read what you, and everyone else I have read about, is going through. A few days ago I had an Endometrial biopsy. I have been having very crazy menstrual cycles, and so I was told the biopsy would be necessary. I was discussing options with the doctor on what can be done to improve the crazy cycles. One of her suggestions was Lupron. Because of what you and the others have written, I will be able to avoid the huge mistake of taking Lupron. Doctors are very good at being dismissive to patients. It has taken years for a doctor to admit to me that I have Lupus. Lynette…every one of us who reads your story believes you. May God and the higher powers help all of you with your struggles because of Lupron.
Laquita says
After reading these blogs, I know I am not crazy. I hurt every single day of my life. I went on the lupron for endometriosis for about 6 months. I was told I couldn’t take it too long because it would cause bone weakness. I specifically asked so as long as I’m not on it too long I won’t have the bone weakness and I was that is correct. So now I have found out this was a lie and I don’t believe the doctor knew it was just something to get a quick fix. I have fibro myalgia and I suffer from horrible mood swings. It’s so bad sometimes my kids don’t even want to be bothered. If I knew what I knew now, I would have dealt with the endometriosis differently because the lupron didn’t help and I still ended up having a hysterectomy at age 33
margaret says
Someone that can help me please contact me……I am going through a lot of these symptoms no one tells me about. Now its to late. I have low blood pressure. I have low cortisol amd acth. I have low glucose. A lot like the woman who.lost her daughter. Reading this scares the shit out of me. Please give me support
Alissa Saginaw says
Margaret,
Did you ever find a remedy for your low blood pressure and low glucose post Lupron use? I’ve had some similar issues. It’s been difficult to find the appropriate kind of Dr to help/do testing. Who measured your cortisol/ACTH, what kind of Dr.?
So far my RE has been trying to help with prescribing estradiol patches have helped sometimes. When hormones are low or chageable the patches help. After that my blurred vision and collapsing can return unless I remove the patch. Birth control pills like Avaine seem to help by cancelling menstrul cycles all together. I’ve found it can make things worse to try both patches and b/c at the same time.
Kindly
Alissa
Sunny Clark says
Hi Margaret
Have you recovered?
Jeanne Walsh says
my 8 year old daughter was put on Lupron for CPP in 2008. She started at 11.25 mg but after switching endos she was on 22.5mg ( monthly) for approx 6 months until in 2011 we noticed her having severe depression and bone weakness so we discontinued her use. Now at age 16 she has fibromyalgia, degenerative joint disease ( just had TMJ surgery 3 weeks ago, the oral surgeons both said that her jaw joints looked like that of a 60 year old woman) migraines, muscle, joint pain, hot flashes, sciatica, IBS and the list goes on. Both endos deny it has anything to do with Lupron, how is that since she was perfectly healthy prior to Lupron? I have emailed 25 attorneys and no one will help us and have spent over $13,000 in medical bills trying to fix what Lupron has done to body.
Jennifer says
I am also a victim of Lupron. My doctor put me on it for 18 months to take every 28 days starting when I was 23. Shortly after coming off of Lupron I started developing severe popping and locking in my jaw. Eventually my jaw completely locked down on me. I ended up having to travel out of state to have surgery on my jaw which they said was due to advanced osteoarthritis of the TMJ and degenerative disc disease in my jaw. I am struggling to pay the bills ( since the recommended surgeon didn’t take insurance). I am trying to figure out where to start in this process since it can not be normal for a 25 y/o to have the jaw of an 80 year old. I feel for your daughter because I understand what she is going through. Hopefully we can all find justice for has been done. Please if you have time could you send me your contact information so that I can give it to my lawyer- jhurley1990@yahoo.com
Annie says
Hi Jeanne
My 10 year old had a lupron infusion for precocious puberty. She got her period in the same year. She is diagnosed with polycystic ovarian syndrome even though she is very skinny and bleeding would not stop for a month and a half. She got terrible shin pain, limp could not walk, could not go to school at times. For the past 2 years the pain got debilitating and last year she got diagnosed with Complex Regional Pain syndrome 1 also known as Reflex Sympathetic Dystrophy and disabled with exploding pain in her internal organs. Now my daughter is 17 cannot go to school, home bound and in AGONY.
Yusuf Ali El says
I am 74 years of age; I am a Moorish American diagnosed with prostate cancer. I have received the one month, three months and six months lupron (chemical castration) injection.
My speech is so mumbled it’s what my older brother and I used to call mush mouth. My penis and testicles have shrunk toward baby size. Lately, three days ago I noticed pains in my arms, legs, calf to upper thigh. Pain feels free to manifest anywhere on my body. Sometimes it feels like tiny explosions are being detonated all over my body.
The brain fog I experience is so subtle I often don’t notice it. My short term memory is about three seconds on a good day. I no longer socialize due to forgetfulness and garbled Speech. I am a Poet who now struggles to recite poems I’ve performed for more than half a century. I had a urologist appointment today. The doctor did not take kindly to being informed I will not accept anymore lupron injections. She and my wife tried to convince me that I should not jump ship this close to the harbor. They were PUSHING on a door marked PULL. I stood my ground.
I SAY NO TO LUPRON. Read Read Read
Jennifer says
How can I get in touch with Lynne Millican?
Larinda says
Jennifer, if you go to her website http://www.lupronvictimshub.com, her contact information is listed.
Larinda says
My story is probably very much like everyone on here. I remember the day quite clearly when I first started periods, because I had written in my diary “My stomach hurts a whole lot and I’m going to bed”. What a surprise a night makes, not to mention an impression. I battled with horrific cramps every month, wanting to just die.
While I was in the military, I heard every lame excuse for why I was hurting; “It’s all in your head”, “It”s God’s curse to all women because of Eve”, “Just deal with it or get everything taken out”. Sound familiar? Finally after 6 years of going to sickbay, they did a laparoscopy and I found out that I had endo. The doctors still said to just deal with it, until my boss stepped in. Now the docs are saying I have one last option, that can only be done once in a lifetime, in order to conceive a child…Lupron Depot. I was 23 and being told this was my ONLY hope. I was told I might get hot flashes and that was it. No warning, no precautions, nothing else. Each month I complained about muscle pain, things falling out of my hands for no reason, and they just brushed it off.
Fast forward to the age of 42. I have suffered cramps once a week for what seemed aeons, only now my cycle has just upped and left me completely, no tapering whatsoever. Docs don’t see this as a big issue even though I am the first female to go through premature menopause while having all of my girlie parts. But now instead of having pelvic cramps once a week, I have them every day of every month. I have dealt with this for 4 years now and the latest idea for my chronic extreme pelvic pain is due to my being raped multiple times while on active duty.
Before Lupron, I was healthy and fit. Now I am overweight, diabetic, have migraines, IBS, fibromylagia, uterine fibroids and polyps, PAC’s, PVC’s, AFib, osteoarthritis, diverticulitis, seriously short term memory, allergies out the wazoo (never had a single one before), degeneration of my spine, possible chance if IC, and as of yet unknown auto-immune disorder and the list keeps growing.
Also I should mention that I was never told to wait 6 months after the last injection before trying to conceive. My son that I was blessed to have has Asperger’s (something no one else has in the family).
This “medication” was a nightmare at 23 yrs old and is still one at 46 yrs old. Granted I have to own up to the being over-weight and diabetic, but honestly there are days when I can barely move and I don’t take pain meds because if I take something, 5 minutes later I am not sure if I actually took it. Whatever name this company chooses to go by, it needs to own up and help those of us who continue to suffer, especially the families of the ladies that lost their life to this “medicine”. Not to mention getting ALL relevant or even irrelevant information out to potential users. Keep up the fight ladies and prayers to each of you.
Sarah Workman says
I’m so horribly saddened by reading about all the women and families who suffered from this drug. It ruined my life. At thirty-three I’ve been partially disabled from this drug. All i needed was a hysterectomy but the doctors kept me sick. Like everyone above I suffer from it all. I had a should replacement at thirty now it’s MS and My heart and celiac disease and tumors growing. I’m beyond disgusted. I will do whatever needs to be done to get this drug off the market.
Nora says
I am sorry for what you and everyone else is suffering because of Lupron. Just last week a doctor I saw recommended Lupron as one of the options for my very irregular menstrual cycles. After all the damage that terrible drug has caused, why hasn’t it been pulled off the market by now?? I’m no legal expert, but it seems to me that if it is taken off the market, it would be an indicator that Lupron is dangerous. I have been fortunate to have dodged this bullet May God help all of you who have taken this very toxic drug.
tracey says
Reading these stories reminds me of my search for pain relief from adenomyosis and pelvic congregation. Doctor was attempting to do trigger point injections and Lupron to stop the cycle. I was done with kids but pressed me to take lupron instead of a hysterectomy. So I went along with them. I was immediately a different person…it never stopped my period…in fact I bled all 3 months that I was on it. And it was not cheap. My blood pressure and heart went crazy. I began to faint. At first just every once. In a while.m
But it kept getting worse to the point I could not stand without fainting and was wheelchair bound. The doctors kept saying it wasn’t the drug and pressed me to take the next dose. Finally, after things did not get better, I did my own research. ..and found my reaction should have had me off the drug 2 months prior severe possibly life threatening reaction. From the company that makes it. So I took my research in with my husband and confronted the doc about why th he pressured me knowing that should have been taken off. I then went to another obgyn who gave me my hysterectomy. Its been 2 years…I am now permanently on blood pressure meds…hypothyroidism med…I have diastolic dysfunction, and one of the most severe fibromyalgia cases the them doc has seen. I had never had any of this before taking lupron. I am 35 years old
Kera Latterell says
Patientsville,
When I was 18 years old, I developed endometriosis. It was not officially diagnosed until I was 28. At this time I began having laparoscopies followed by Lupron Depot shots. I continued these for the next 6 years. Beginning at the age of 30, I began suffering from random symptoms that have been unexplainable. I have spent the last 8 years doctoring at Mayo Clinic in Rochester. I have every test under the sun run on me, most of them many times more than once. I have spent multiple weeks in the hospital. I am in clinics at least once a week on average. I used to be involved in so much. I was the head of our Christian Education program at our church, I traveled all over speaking at retreats, I traveled the world for my work with humanity organizations, I wrote curriculums. I have now lost my job and live with my parents as I can no longer afford to live on my own. I now have to take heavy duty pain killers just to get out of bed and make it to the couch. I can no longer go out as I don’t have the energy to go anywhere or speak with people. I have developed severe migraines sending me to the emergency room at least monthly and now requiring Botox injections to help control them, I require nerve blocks in my occipital nerves to keep them from stiffening so tight that it sent me to the emergency room, I have been diagnosed with fibromyalgia, severe muscle and joint pain, tachycardia, chest pains, difficulty breathing, abdominal pain, photosensitivity – including dimness of vision and difficulty with my vision, audio-sensitivity, dizziness, fainting, memory loss, insomnia, nausea and vomiting, unexplained fevers, severe dermatitis in my face, and MRSA infection.
I have begun doing research on my own. I have recently sent for all of my medical files from all of the clinics and hospitals at which I’ve been treated. I’m trying to find anything that seems to be the beginning of it all. The other day on TV, someone mentioned Lupron and it was like light bulb went on. I immediately Googled “Long Term Side Effects from Lupron Depot” and the National Women’s Health Network was the first article that came up, the article from the Womens Health Activist Newsletter, September/October 2008, by Susan K. Flinn, MA. I was in tears. Nothing has come this close to explaining what is wrong. I’m trying not to get my hopes up. But it was so nice to hear of others that were experiencing the same thing as me – not that I would wish this on my worst enemy, but it’s still nice to not be alone.
Please could you send me any information you have acquired about these affects, any treatments that have been found to help, any sort of prognosis that has been discovered for people with type of severe reaction, and if there is any way of testing to verify that this is what is wrong. I would like to be able to bring as much literature into my medical team as possible.
I realize not everyone has the same reaction. I understand that since I have a majority of the symptoms, I may have a more severe reaction. My doctors have told me that I have a tendency to respond much worse than most people in anything that I contract.
Any help you can give me would be extremely appreciated. Thank you so much! If you could send it hard copy through the mail, I would greatly appreciate it. Please, can you help.
Kera Latterell
kera_mymail@yahoo.com
507.430.4953
622 East Chestnut Street
Redwood Falls, MN 56283
Sent from my iPadPatientsville,
When I was 18 years old, I developed endometriosis. It was not officially diagnosed until I was 28. At this time I began having laparoscopies followed by Lupron Depot shots. I continued these for the next 6 years. Beginning at the age of 30, I began suffering from random symptoms that have been unexplainable. I have spent the last 8 years doctoring at Mayo Clinic in Rochester. I have every test under the sun run on me, most of them many times more than once. I have spent multiple weeks in the hospital. I am in clinics at least once a week on average. I used to be involved in so much. I was the head of our Christian Education program at our church, I traveled all over speaking at retreats, I traveled the world for my work with humanity organizations, I wrote curriculums. I have now lost my job and live with my parents as I can no longer afford to live on my own. I now have to take heavy duty pain killers just to get out of bed and make it to the couch. I can no longer go out as I don’t have the energy to go anywhere or speak with people. I have developed severe migraines sending me to the emergency room at least monthly and now requiring Botox injections to help control them, I require nerve blocks in my occipital nerves to keep them from stiffening so tight that it sent me to the emergency room, I have been diagnosed with fibromyalgia, severe muscle and joint pain, tachycardia, chest pains, difficulty breathing, abdominal pain, photosensitivity – including dimness of vision and difficulty with my vision, audio-sensitivity, dizziness, fainting, memory loss, insomnia, nausea and vomiting, unexplained fevers, severe dermatitis in my face, and MRSA infection.
I have begun doing research on my own. I have recently sent for all of my medical files from all of the clinics and hospitals at which I’ve been treated. I’m trying to find anything that seems to be the beginning of it all. The other day on TV, someone mentioned Lupron and it was like light bulb went on. I immediately Googled “Long Term Side Effects from Lupron Depot” and the National Women’s Health Network was the first article that came up, the article from the Womens Health Activist Newsletter, September/October 2008, by Susan K. Flinn, MA. I was in tears. Nothing has come this close to explaining what is wrong. I’m trying not to get my hopes up. But it was so nice to hear of others that were experiencing the same thing as me – not that I would wish this on my worst enemy, but it’s still nice to not be alone.
Please could you send me any information you have acquired about these affects, any treatments that have been found to help, any sort of prognosis that has been discovered for people with type of severe reaction, and if there is any way of testing to verify that this is what is wrong. I would like to be able to bring as much literature into my medical team as possible.
I realize not everyone has the same reaction. I understand that since I have a majority of the symptoms, I may have a more severe reaction. My doctors have told me that I have a tendency to respond much worse than most people in anything that I contract.
Any help you can give me would be extremely appreciated. Thank you so much! If you could send it hard copy through the mail, I would greatly appreciate it. Please, can you help.
Kera Latterell
Sent from my iPad
DeeDee Still says
ok i was sitting here reading all these emails and comments and they have me floored and worried,my daughter was put on Lupron shots at the young age of 5 she had one a month till she was 13 for precocious puberty cause she was about to start her menstrual cycle at 5,she was also growing breast,she has had a lot of issues and health problems through out her life,she is now almost 26,my child is only 4’8 wears a size 2 in little kids shoes,her hands and feet are the size of a 4 year old,they said her bone age (by scans while on Lupron) is 80,she absolutely can not get pregnant but hasn’t seen a doctor for this she does have regular menstrual cycles but she has had bowel trouble and bone pain for years but here is my main concern,my child has mental issues and my husband and I have our concerns that all the years of Lupron caused it and all her health issues,I am deeply concerned for sure after reading all this stuff here,my child is a compulsive liar,everything that happens is everybody elses fault etc and she constantly tells people she is pregnant and pretends to be pregnant then steals,pictures of babies and ultra sounds of her friends and pretends she had the baby,then she pushes a baby doll around in a stroller everywhere she goes and keeps it in a car seat when at home,there’s more to it but those are just some of the things going on,my child is seriously mentally disturbed and i truly think Lupron caused this,nobody in either side of our families have ever had mental issues except my younger brother did suffer from depression and committed suicide 11 years ago,she also constantly threatens suicide and i don’t know what to do cause nobody will help us cause of her age,I need help here!
DeeDee Still says
my email since i dont see it showing
deedee.still@yahoo.com
K says
I was in your daughters position my mother and doctor made me get shots at age 8 so I didn’t have early menstruation but regardless it did nothing. Now i am 23 i have severe depression, anxiety and memory loss not sure if it’s linked to lupron but I’m sure it is in some way. I stayed 5 feet tall and got my period early..you tried to do the best thing for your child by listening to the doctor like my parents did but that’s not always the best..they get paid for using lupron knowing the bad side affects which of course they don’t inform you of. But don’t blame yourself!! The world is just so corrupt especially the health field. I am not a doctor by any means but it sounds like your daughter has more physiological problems I would take her to a good psychologist get some testing done and if you think it’s linked to lupron get a good lawyer!!
Andrea says
My daughter, age 9, had a bone age of 12 and we are seeing end on Monday. The pediatrician said they will want to start Lupron. They think it is related to a prior concussion three years ago. I am freaking out about this. I don’t care if she ends up short, but wondering if anyone can tell me if untreated precocious puberty patients can still get pregnant or not. I don’t want all of the side effects of the medication. Plus she is already on aspirin and periactin for complicated hemiplegic migraines that they also think we’re from her concussion. Any advice would be greatly appreciated!!! Worried mom.
Stephanie Bowen says
My daughter was also put on Lupron for cpp at age 7. Took it for 4 years. She had lots of problems physically but developed mental issues as well. Horrible depression, suicidal thoughts, cutting. She passed away in December from suicide. I never knew any connection until recently. She was only 19 years old!
Christina Jewett says
Hi Stephanie – I’d be interested in speaking with you. I’m a journalist, my bio is here: revealnews.org/author/christina-jewett/
I’m at cjewett@cironline.org or 916.202.0886 . Thanks!
– Christina
Marcie Roney says
Marcie Roney
marciejo621@gmail.com
Donna Norton says
Everyone harmed by Lupron needs to contact Del Mar Law firm in San Diego California!!!!!!! Look them up on the internet and tell them your story!!
laura says
Which attorney do you recommend? There are several and none of them indicate that they have experience with Lupron and/or Abbott Pharm. Have you had any personal experience with this particular firm? Contact me directly, if you’d like at:
lauralaura_4@email.com. Please put LUPRON in subject line. Thanks!
Carol Potts says
I was treated with Lupron injections for 6 months. The day after the injections I would have a migraine and vomit all day. They didn’t go away after the Lupron was stopped. I now have GERD and was diagnosed with Depression after the injections. It is poison and they know it.
Tammie says
I have had major problems the last three years all of a sudden a switch flip and I am to the point I can not do anything at all and need to pace myself. I have been diagnosed with Fibromyaglia, Tachycardia, IBS, Photosensitivity, UCTD (undifferentiated connective tissue disease) Raynauds. About 14 years ago I was given the options of getting pregnant, doing the lupron depot or having a hysterectomy. I was only 28 at the time and wanted to try for a boy one last time so I chose to do the lupron depot shot. BIGGEST MISTAKE EVER!!! I went into a deep depression, they put me on 2 anti depressants and I was having bone loss my teeth chipping very easily. I had no idea how bad my depression was until I got that lupron out of my system. It has been 10 since having a partial hysterectomy and I believe my endo is back. My doctor said I had two options first one was to do the lupron and would probably have to do that indefinitely or do the laproscopy. I told him I had a really hard time on the lupron and was scared of it so we are choosing to do the laproscopy. I have often wondered if my other illness was related to that stupid shot and now after reading everyone’s experiences I am starting to believe that is where it is coming from.
Barb says
Tammie, I have all the same problems as you. I was wondering if you ever went through with the laparoscopy after your partial hysterectomy and if so did they find endo again? I was on Lupron 25 years ago then had a partial hyst. Started have a lot of pain againand and know back on Lupron. I was told if you take the uterus out it would take care of the endo. Ya! Know I’m being told it’s because I of my ovaries. Why didn’t they take them out 25 years ago?!?! I’m clueless! Soooo sick of pain and all these medical conditions I have.
Belinda says
I am 55 years old my experience with Lupron began when I was 33, the physician who really didn’t care about me and of course found out later that he received $1000 for every injection he managed to get his patients of Lupron. I started out with a rare thyroid cancer from there I went to Addison’s disease fibromyalgia Sjogren’s syndrome diabetes, severe chronic migraines rheumatoid arthritis osteoarthritis in inflammatory arthritis. In the last six months the rheumatoid arthritis has made it down into my toes and that’s a whole other experience in pain when you actually have to walk on something that has rheumatoid arthritis in it. I also have a problem with my eyes and my vision I now have started having problems with my pancreas and I’m sure problems with my liver isn’t too far off, considering I’ve been on OxyContin’s hydrmorphon now fentanyl patch since 2006 2007. I used to be a young happy active person and once Lupron became a part of my treatment for pain in my lower right side my whole life changed the real sad part about it I did not nor could I have endometriosis any longer I had a total hysterectomy some years before these injections and once they got my heart condition under control they were able to do exploratory surgery and found that I actually had an inguinal hernia not endometriosis. But my doctor didn’t care he was one of the thousands of doctors that received a kickback if you research it you’ll find out that many doctors received $1000 for every patient they could get to take the Lupron injection. I’ve gotten to the point where my pain medicines don’t work anymore I don’t know how my doctor feels about medical marijuana but we are going to have that conversation when I see her in a few days I do have to live many many more years I’ll be damn if I’m going to let a greedy doctor and drug company take any more of my life away from me. I am very lucky to have a primary care doctor that believes me and cares enough to help me live for as long as I possibly can and trying to keep as much of the sever pain away from me, she has done all she can but the Lupron has also made it difficult for my system to absorb my pain medications. I am going to keep fighting the fight…..don’t any of you give up, don’t let this drug and the inventor win……..I would like to see Tabb go under, clear to hell!!!!
WayneDowns says
Saw uroligst in Jan. of 2015 He said my Psa was around a 10 and then on the Gleason scale it was to high to treat without surgery or radiaton which was a 8.5 on the gleason scale. Decied to do the radiation but not right away so my oncoligst said I could have a 6 month lupron so i could have the summer off which made me happy. I had a 6month shot on March 9th and probably i month after started having some weakness in my legs at first thought as I am a bicyle rider and 77 years old that could be kind of normal but started getting worse as I had cut back on bike riding . Talked to onocoligst nurse and she said it could not be anything to do with lipron shot. I keep Finding out that through my 2 brothers who were both pharmists for years that the shot is causing my problem WhAT TO DO i DON’T KNOW
Terri M. says
I was 39 when I went into complete ovarian failure for years I just thought I was unlucky. I know believe it was the two rounds of Lupron.
Michele Musko says
I have signed several petitions to get lupron off the market. I have suffered over many years from side effects that many have described on this website. My memory loss being a major side effect. Not to leave out the horrible bone pain, Degenerate Disc, heart problems and a complete personality change.Plus so many other health problem,headaches,anxiety, and so on. I had my first shot 24 years ago, a total of 6 and somehow I knew it had to be linked to Lupron. After all these years I am shocked to see all this suffering still happening. I pray for all of us. I take pain pills but even that does not stop my suffering. I will now become pro active in finding out what else I can do to help make others aware that this is still going on ruining even more lives. I have not been able to work because lupron has disabled me. Lupron ruined my life. My own family does not even believe this drug can do this kind of damage. I will be sending them a link to this website.Maybe then they will understand what happened to me. My heart goes out to all of you who are suffering. Thank-you for sharing your heartbreaking things you have had to endure because of a drug being approved without proper research of the short and long term side effects.
Riham says
So true!
Our families & friends can’t comprehend the damage done by it!
Connie says
My health changed after having three IVF treatments and one cycle with frozen ICIS embryos that resulted in the live birth of my son. I miscarried early in first IVF treatment and had a late miscarriage in the second IVF treatment. Third IVF failed. My fourth time was a frozen cycle. My weight and blood pressure increased while doing these treatments. My back and bones hurt and my overall health kept getting worse. I developed breast cancer ( no family history) when my son was six and had lumpectomies followed by high dose targeted breast irradiation. SS listed me as disabled 7 1/2 years after using Lupron during IVF for mobility issues. I have spondylolisthesis (Unstable spine, my disks slip every step I take), spondylosis, DDD, severe facet joint arthritis, synovial cyst disease with bonus slipped and flattened disks plus bone spurs. I have developed a long list of other serious illnesses as well. I had to have my gallbladder removed and I also have sleep apnea, costocondritis, anxiety and depression. I went from being an outgoing athletic person to being overweight, in constant pain and almost housebound now. Could my miscarriages, breast cancer and spinal diseases (so unusual for someone my age) be caused by the use of Lupron. I did undergo a double spinal fusion which left me with permanent spinal nerve damage and atrial loss of the use of my right leg. I could never figure out why I became so sick and disabled. What’s going on with this drug LUPRON?? My IVF doctor in Massachusetts told me that Lupron was used to put my system into a menopause like state during the egg harvest cycle. No one told me that it would cause disabilities.
Christina says
Hi Connie – I’m an investigative journalist taking a look at Lupron use among women undergoing IVF. I’d love to hear from you. My bio is here – https://www.revealnews.org/author/christina-jewett/
I’d love to also hear from other readers who experienced side effects, had a still birth or child with a developmental issue after IVF use, or had trouble with the drug in precocious puberty treatment. Thanks.
You can reach me at cjewett@cironline.org or 916.202.0886 .
all best,
Christina
Melissa says
Just wish to chime on. Approaching two years since the last of 3 monthly injections. Can’t afford more MD appts but have hard time just walking most days. I was a marathon runner. And I suspect my thyroid has shut down too. I’m psycho crazy lady many days now. Worked as a social worker for 17 years at same employer until last May when I finally very sadly realized I needed to resign as the job stress was too much when coupled with physical problems from what I firmly believe has been aftermath of those few depot injections. I feel like my life is gone. I’m dead when I think of how I used to be. And I am sad and angry. And most days just wish God would take me home.
Mimi says
I am so sad to read all these stories. I know not all drugs work for all people, but I found Lupron to be a god send. I had severe endometriosis. My bowel movements were a mess, and painful. I could not stand up straight without feeling as though my inner organs were being stretched to the max and ripped. I could not walk without feeling shooting pain through my groin/abdomen. I had a couple laproscopic surgeries and when it looked as though I was due for another one, my obgyn sat down and had a long discussion with me about Lupron. He told me of the risks, side effects that some experience, the on-label and off-label uses, as results he’s seen in his career with Lupron. I had some hesitations; but, I needed to do something. I did a six month round of Lupron at one shot a month and I managed to avoid another surgery. The only side effect I experienced was a tiny bit of weight gain and restless legs during the treatment.
Tracey says
Hi Mimi, this is the first positive comment I have seen anywhere so far. Will you please tell me where on your body you were given the shot..? I’m wondering if that plays a role in all of us suffering from Lupron injection. I am at this moment experiencing a random pulsating feel in the back of my head that feels like a blood clot trying to push its way around my head..? I have moderate mental fog, insomnia, tinnitus, jaw pain, bowel issues, vision problems, tremors, vocal changes, HOT FLASHES, DEPRESSION, (those are the worst). And now I’m moody, irritable, exhausted. I only had 1 shot in my shoulder and I can’t wait for this to get out of my system. I exercise, drink LOTS of water, drink cleansing liquids and after a month still no changes. What were the dosages you received? Thanks for taking the time to read and I hope you can help me investigate this drug as I do not believe it should be on the market. Thanks in advance, Tracey
Kim says
Hello Tracey! I certainly hope that you have recovered from the Lupron injection side effects you were experiencing, how awful! I was given only one injection this past October, I began experiencing hot flashes almost immediately followed by horrendous migraines, insomnia & I can’t help but wonder if recent muscle weakness (past couple of months) is also a result of Lupron. I was given the shot to help shrink a large fibroid, the doctors were estimating I would need 3 of the 3 month shots. Within 2 weeks of the shot I found myself in the ER with extreme abdominal pain due to an ovary distortion….. also a side effect of the Lupron. My surgeon performed an emergency hysterectomy & removed the 10 pound fibroid however the Lupron has of course remained in my system with all of the side effects it brings to the party. I’ve literally been counting the days (I only have 2 left!) until this potion is out of my system & I’m wondering how long it will take the side effects to go away….Any thoughts based on your experience?
Meg says
I was diagnosed with endo in 1997, when I was 17, after a laparoscopy. They “had” to cut me all the way open, because it was so severe and multiple organs were involved. Most of my freshman year of college was spent on Lupron, then another years later before I knew better.
The only side effect that left were the hot flashes, everything else got worse or added on. My doctor told me nothing. My options were to get pregnant right after my surgery (in high school) or take Lupron. Now I hate the body I’m trapped in. Nothing like it was before, and I no longer trust doctors. They don’t believe you.
K says
I was forced to take lupron shots weekly starting at age 8. According to doctors I was developing quickly and they didn’t want me to get my period too early they told me I would never grow past 5feet tall unless I got the shot. I never grew past 5 ft and got my period very early regardless but I was wondering if it can make you infertile? I’ve been trying for years with no luck..what are the long term affects and not just short term?
laura says
Are there any Lupron victims residing in/near Tucson Arizona? Be nice to form a support group. I feel so isolated.
Samantha says
I Just Started Lupron A few weeks ago and have started to experience some of these symptoms And now I am starting to experience pretty severe suicidal thoughts. Should I stop these injections? Will it just get worse? I am scared after reading this because I don’t want to have even worse experiences.
Lynne Millican says
Samantha,
I hope you have consulted with your prescribing physician, and also hope that there are supportive medical and mental health systems in place to help you. Imo, it is unconscionable that you and so many others belatedly learn of Lupron’s risks and adverse effects through online reading of this or similar articles.
In answer to your question of whether Lupron should be stopped: According to a 1993 study ‘Adverse effects of leuprolide acetate depot treatment’ (http://www.ncbi.nlm.nih.gov/pubmed/8425646) – “Two of the most disturbing adverse effects experienced by women receiving Lupron were depression and short-term memory loss. … Although the mechanism of these symptoms are unclear, GnRH-a treatment should be discontinued if depression or short-term memory loss develops.”
Christy says
Hi
I live in the UK. I have suffered from heavy periods for about 16 years (I am 32 next month). I was given Microgynon at 19 and this caused me to have a Pulmonary Embolism in my right lung and I was told I could not take the Combined Pill ever again. I had Mefenamic Acid for a few years but this did not lessen the bleeding much at all. 3 years ago I had a Mirena coil fitted but this caused depression in me (I am prone to depression after I had issues with depression, anxiety and OCD in my teens) and I had the coil removed in 2014 as the doctor insisted I persevere!!! I then tried Depo Provera and this combined with all the other treatments made me bleed constantly – every day. Was referred to Gynaecologist and they prescribed Zoladex (Leuprolide acetate). Had Prostap (Goserelin) for 4 months and then Zoladex (Leuprolide acetate) for 2 months (last injection was 31/03/2016). I am suffering increase of appetite which caused weight gain (having had weight problems in the past this upset me), aches, hot flushes, disturbed sleep but worse of all memory and concentration issues, severe depression, mood swings, anxiety and an feeling that everyone is lying to me and I am going to lose every thing. I can’t stand it. It is ruining work and relationships and for some one who has low self esteem anyway I feel destroyed. I don’t know what to do. My GP was wary of the drug being used but I trusted the Gynaecologist as they are more expert.
Sene R. says
Lupron was one of the drugs “recommended” for fertility issues; however I read somewhere that its ingredients include a form of formaldehyde. Does anyone know if this is true? And true or not true, is there a reputable site that displays the actual ingredients of the drug? It’s troubling that in this day and age we demand ingredients on food items but the drug industry is allowed to have more liberties. Thanks for any info you can provide! Lord help us all!
Gwen says
Back in 1992, I received 5 monthly Lupron injections prior to surgery for endometriosis and fibroids. I was told that this would help shrink the growths and make them easier to excise. All of the symptoms of menopause hit me like a ton of bricks and I complained to my reproductive endocrinologist about a troubling irregular heartbeat, as well as relentless insomnia. My complaints were dismissed. After the surgery, I was encouraged to continue with the Lupron for a few more months, but I declined.
I was diagnosed with full blown osteoporosis at 55, likely brought on by the Lupron. Subsequent scans show continued bone loss. This is another “bonus” no one warns you about. I continue to have problems with irregular heartbeat.
Lesley says
Gwen,
You may want to consider the connection between Lupron and Hyperparathyroidism. I, too, took Lupron around 1992. Have recently had surgery for Hyperparathyroidism after 12 years of high calcium and numerous symptoms including palpitations and osteoporosis. Best wishes.
Chealsy says
I had recently went through a 3 month series of lupron. At first I was okay, I had my period during the first month. But I noticed how horrible my mood swings had become. I started to feel helpless and began experience memory problems. Second month, my depression started to get worst and it has progressed from there. I have a prior history of depression, substance abuse problems, eating disorder, and suicidal tendencies (all which my doctor is aware of). I have told him that I am miserable on the shots. Well 6 weeks ago he told me I wouldn’t have to continue with the shots, that I was completely done. Now today he tells me I have to go back on them and there is nothing I can take except for advil to help with the hot flashes. Meanwhile everyone in my personal life has told me how emotional I am on these shots. I’ve been told I have nothing to worry about that I need this medicine. But I don’t want to have to take it. My depression has been so much worst while on this medicine. I’ve been told different information by different people. I’ve been if I need this medicine (which according to the doctor I do) that I need to take it. I honestly do not know what to do.
K says
Everyone reacts VERY differently to Lupron. For me, Lupron is giving me my life back. While I empathize having to take off work for a few years, I’ve lost my career, friends, and entire life for 7 years due to systemic inflammation, endo/bursting cysts, what they labeled and passed me off as “fibromyalgia” when I really have EDS and a mast cell activation issue. My cysts enough are bad enough to put fluid in my abdomen and send me to the ER thinking my organs are bursting but the worst is the daily migraines which get even worse around menses.
I just had Lupron 3 days ago, and sure the first day was a hormone dump but wow I forgot what a ‘normal headache’ felt like. :O (I’m sure in others, the hormones flip you to the opposite! You poor folks probably encounter the horrible migraine and symptoms that I typically have every day from my hormonal sensitivity, so I get it!) After the first day passed I feel like a normal person! My arteries in my head are no longer widened painfully from my waking moment… for some of us, we NEED our hormones abolished. The only way I ever had a life before was shutting off my ovarian function through hormonal birth control, which caused weird issues not to mention always ran me the high risk of stroke… so I can empathize with the “odd” effects you’re experiencing from Lupron. For instance, Depo-provera makes me bleed for 3 months straight, but it’s wonderful for other people and shuts off their period for 3 months. We’re all different and I appreciate that these options should be available. I cannot even get hormonal birth control because I am so high risk so Lupron shuts off my ovaries and the resulting mast cell activation. I’m so happy I want to cry. It is not bad for everyone.
Something that stands out to me is the daily dosage they put you on. That seems like it would send your hormones in a dump cycle daily. That’s ridiculous! I had a 30 day injection.
I’m now going to find out more about the durations. Lupron is finding to be very promising in IBS and other vague inflammatory conditions that are sensitive to hormones and it modifies pain perception. I’m sad to hear it works differently in other people but everyone’s chemistry is different. For instance, I can’t eat chocolate yet I’m sure most of you can. I’m so responsive to histamine and other substances that literally my own hormones are making me sick. I was unable to do anything for years and now I wake up feeling like a normal person.
I seriously want to cry from happiness because of the Lupron! I was afraid to take it when they recommended it years ago and now I regret not taking it sooner. It’s worth a try and if it doesn’t feel right, by all means STOP. I hate that some doctors are requiring and pushing it! That’s why I was so scared. These injections are scary because you can’t remove them and they really do effect people in different ways. I’m SHOCKED that it’s improving my life SO much SO soon! ???
I’m also feeling some depression but it’s also the fact that I am going through hormonal rollercoaster, which I acknowledge, and that lupron is further delaying my wish to have children. In the state I was before, no doctors were encouraging me to have children as it was, so I’ll take feeling better and not having a daily migraine I guess.
Laurab says
Hi K, are you still feeling positives from Lupron. I started monthly shots 4 months ago and felt the same amazing results as you, literally felt like a new person. Between the 3rd and 4th injection the doc decided to try a nasal spray which I took only two doses because I felt horrible immediately. Two weeks ago I started to feel a pain in what I expect is my colon and it has progressed to where I can’t eat or drink anything without major pain and bloating. I also now have sciatica down both legs. Only ever had that when pregnant. I feel ill all day, daily migraines are back, have horrible insomnia and just went through a bout of hot flashes every 20-30 mins 24/7 for a couple weeks. I went to the doc today and now have abdominal and pelvic ultrasounds booked and endoscopy and colonoscopy referral. However I suspect after reading this website that it’s likely the lupron. I hope you are still feeling well but curious if you had the same experience as I did.
jeanne says
have there been any successful lawsuits concerning lupron?
thx
jeanne
Susan says
I received Lupron in 1997 for 6 months, dealing with infertility and endometriosis. Every symptom listed here I have experienced. I am at wits end.
Chealsy says
I’m currently go through some things regarding my health. I was on lupron from April to June 2016. I have had some horrible adverse reactions. The doctor that put me on the shot would not listen and wanted to put me back on the shot. I have since switched doctors. My new doctor is concerned and has already ran some testing (blood work and pelvic ultrasound, I have advance staged endometriosis). I’m worried especially since I’m having side pain, and lower abdominal pain and I haven’t had my period since April (and I’m not pregnant just received 3 shots of lupron). Any advice?
ken says
Hi, I am a 74+ y/o male and was leading a healthy, active, normal life until they discovered I had prostate cancer, in its infancy. Fortunately it was discovered early but was the aggressive type. Urologist recommended Firmagon to be followed by Lupron but no mention of the side effects. The side effects are horrible, for example: Anxiety, Lethargy, Mood Swings, Nervousness, Carcinoma of the ear, Incontinence, Depression, Fatigue, Muscle /tenderness, loss of smell and hearing, increased moles, sleep disorders, just to name a few. However the worst is Abdominal distention which put pressure on lower abdominal areas resulting in 5 hernia repairs plus currently 2 more (seeing the surgeon tomorrow). One article mentioned loss of muscle fiber, which the mesh holding everything in place is sutured to. Some of the mesh is not holding like it should. Another major side effect for me is bone density and osteoporosis. A DEXA scan showed severe bone density so they prescribed FORTEO, a very expensive drug to initiate bone density growth. No increase in density but bones are growing, new growth shows on dental x-rays. Shoe size increased from size 12 to 14 due to expanding bones, plus it is now uncomfortable to walk because all bones do not grow at the same rate. Other side effects that I am tolerating are expanded breasts, loss of libido, shrinking testicles, impatient with everyone, loss of friends and friendships due to mood swings, I had CyberKnife radiation therapy and that coupled with the Lupron gave me a PSA of ‘0’, so that’s the only good news. Have been off the LUPRON for 6 months, have not noticed any changes for the better, was told it takes a year or more, or one may never recover. None of this was ever mentioned. I went from a very active person to some sort of depressed vegetable with no ambition. It’s a struggle, but I am alive, just not living. Another report states that androgen deprivation therapy shortens life span appreciably, varies by the length of treatment. Urologists are rated by the success of patient survival over 5 years, no mention of damage done or the torture involved to gain success.
Tammy says
I just got a Lupron shot about 3 weeks ago do to suffering from ovarian pain. I had a hystorectomy about 10 years ago which helped for many years but then began to suffer from ovarian pain about a year ago. My doctor suggested this shot or to have my overies removed, being unable to afford the time off for surgery I chose the injection. I suffered with minor headaches at first but they went away. then I started working out and eating healthier but In the last week Ive began experiencing ongoing head aches, night sweats, chills and hot flashes, severer lack of energy, tired continuously, noticing a change in my body odor, abdominal pain, lower back pain, and today I had a mental break down at work, ( how embarresing and scared if this occures again I could loose my job) which has encouraged me to read up on side effects and now has lead me to this page. So yup, beginning to regret this shot, and instead of helping I only feel worse, and missing time at work. Any suggestions, please!!!
Kim says
Hello! I certainly hope that you have recovered from the Lupron injection side effects you were experiencing, how awful! I was given only one injection this past October, I began experiencing hot flashes almost immediately followed by horrendous migraines, insomnia & I can’t help but wonder if recent muscle weakness (past couple of months) is also a result of Lupron. I was given the shot to help shrink a large fibroid, the doctors were estimating I would need 3 of the 3 month shots. Within 2 weeks of the shot I found myself in the ER with extreme abdominal pain due to an ovary distortion….. also a side effect of the Lupron. My surgeon performed an emergency hysterectomy & removed the 10 pound fibroid however the Lupron has of course remained in my system with all of the side effects it brings to the party. I’ve literally been counting the days (I only have 2 left!) until this potion is out of my system & I’m wondering how long it will take the side effects to go away….Any thoughts based on your experience?
Sarah says
13 years ago I was put on Lupron (injection every 3 weeks for 6 months) after my first endomoetriosis surgery. I was 25 at the time. Almost immediately i had terrible side effects, weight gain, horrible hot flashes, unbelievable mood swings, bone pain, terrible insomnia which i’d never experienced before. My side effects were so bad they said they could inject me with something else to counteract them but i refused. After the 6 months, i was then put on depo provera and also had terrible side effects. Not sure if they were still lingering side effects of the lupron or a combination of both. I have not felt the same since. I have battled with my weight since, I’ve not had a restful night’s sleep in 13 years, still have problems with mood swings, and occasionally hot flashes though they’re not as intense. Bone and joint pain too. Actually i just sort of hurt all over my body all the time. it’s like i can draw a clear line between when i felt well (despite the pain with endometriosis) and after lupron. I’ve felt horrible ever since. i’m so saddened to hear that it’s affected so many women and men and ruined lives. i’m afriad that i will never feel well again. It’s already 13 years and i still feel like crap
Marilyn says
I’m not certain if my problem is Lupron related because I was treated as a young teen for severe menstrual bleeding and pain. I had different meds and didn’t know what they were. In my 30s I was diagnosed with endometriosis and had surgery and meds afterward. In my 40s I developed extreme muscle, bone and joint pain. I now have Hashimoto’s thyroiditis, fibromyalgia, muscle weakness, pain in my bones, joint and stinging burning sensations in my muscles. I have a hopeless feeling that I will never be better. I’m still seeing doctors with no resolution.
john says
I had 5 Lupton injections for stage 3. Gleason 9 prostate cancer every 6 months. 44 radiation treatments also. During that period I was diagnosed with atrial fibrillation, copd, severe sleep apnea that alomost killed me..7 months after my last radiation treatment I developed radiation proctitus. Iam still bleeding been almost 2 years. I also have been diagnosed with diabetes. Uncontrolled.I have been diagnosed with liver chirrohois non alcoholic. Uncontrolled. I have terrible ascites. I am weak and fatigued. I have sciatica that is sucking the life out of me .iam having trouble breathing certain times of day, because of ascites.I have to take to the bed early and get up late. I think my bi-pap gives a tiny but of relief. THINGS appear to be getting worse. I do have thoughts of. Making it over. Iam not ready for that yet but if it gets worse and I think it will I don’t want anymore pain. If one knows how to do this please help. Something I can take and go to sleep. No pain , something with no pain. I am not feeling sorry for myself.there are many worse off than me. NOW Iam. Begining to think Lupton has something to do with my woes. I would participate in any litigation going forward. That’s my story John friedman
Razz says
Hi,
My father dx with end stage Prostate Ca. Last 3 years on Lupron injections. PSA was good until 6 month ago it went up again. Onco stopped all treatments and refered us for hospice. Now my father has pituitary tumor, blindness, swalowing disorder, liver cirrhosis, bed bound, dementia. I believe that Lupron is killing him not prostate. Iwant to signg petition for gov to investigate medication.
Bernadette says
I recently stopped Lupron after 3 years of monthly shots. At that point, I was having severe pain throughout my body, unable to grasp items with my hands along with the hot flashes, anxiety and all round personality changes. The Lupron was to preventive measure after a bilateral mastectomy.
Once I stopped the Lupron shot, I had chronic constipation. My gastro doctor said he recently had another patient stopping Lupron with the same complaint of severe constipation. At the same time, I developed rashes on both of my legs that have persisted for 11 months. I then began to have dizzy spells where I was tested to rule out TIA’s.
Eight months later I was told I have a severe B12 deficiency due to an auto immune disorder in my stomach cells which blocks the absorption of B12. I am now on a regiment of self administered B12 shots twice a week. Lack of B12 can cause an array of symptoms including fatigue, neurological impairments, dizziness, skin conditions, insomnia, mood disturbances…. Luckily, I had a doctor who had treated me for Lyme before my cancer diagnosis;That doctor was able to give me some answers. I also found out I have Epstein Barr and HHV-6 viral overloads with my weakened immune system.
My frustration is that the medical profession does not explore the linkage to the Lupron shots. I felt that my oncologist dismissed my complaints about the side effects. I decided after 3 years, I could no longer take Lupron. I did not show up for my scheduled injection and my oncologist never contacted me in these past 11 months.
Lupron needs to be further investigated and the medical profession needs to document patient’s complaints about side effects.
Laurab says
Hi Bernadette, what type of doctor was able to provide some answers and the Epstein Barr diagnosis? Functional medicine? Naturopath? I have some tests booked (endoscopy, colonoscopy, abdominal and pelvic ultrasounds) but I expect my issues are from Lupron and the tests might be clear, so I may be labelled hypochondriac. Would rather spend my time and energy on someone who will actually listen to me and not just their limited tests. Thank you
Cheryl says
My daughter just was admitted to the ER after her 5th injection of Lupron. She was not sleeping, not eating and then on this last injection she took it through her into a craziness. She was talking things that made no sense, she felt disconnected and not her self. They wanted to admit her to a psychiatric Hospital, but we refused and took her home, where she will not get another shot of Lupron and slowly wean this out of her system. My daughters is 31 and has never had any signs of these behaviors till she started the injection of Lupron. I strongly recommend no one to get these injections. she was givens these for endometriosis and not being able to conceive. these injections mess with the brain and your hormones to the point of making you go crazy and not yourself they are so unsafe to have on the market for people to take. I cant wait for her to get this out of her system so I can talk straightly with her. each passing day she gets a little better. Lupron should be taken off the market and I will advocate for this and people to be educated before taking them. They can cause so much health problems the risk is not worth it. please educate yourself before letting some doctor tell you these are for you>>>Cheryl
MNM says
Hi !
I’m in the middle of my 2nd IVF treatment using donor eggs. I’m supposed to have Depot Lupron injection soon as part of the protocol. It will be the 4th time taking Lupron in my life.
Personally I started experiencing some of the side effects of the drug, i.e. bone pain, especially in the hips, never ending cough, depression, mood swings, heart palpitations, insomnia, hot flashes, blurred visions, lower back pain, short term memory loss, etc. just to name few.
Last time I saw my Dr., I brought all those to her attention and asked if we it’s possible not to use Lupron this time. Since I can have irregular periods (24-30 days long), I was told that we had to keep Lupron in my IVF protocol.
In the meantime, my symptoms have worsened since my last period.
I did a research on Internet and found out that the drug is very controversial, there was a lawsuit in USA, and millions of people had experienced debilitating side effects from taking it.
After readying all the feedback, I’m convinced that my symptoms are due to the Lupron injections and I should not be taking any of them anymore.
I’m terrified of the possibilities of becoming disabled as a result of this dangerous drug.
I will insist on having the treatment without using Lupron or I’ll cancel it.
I’m desperate to have a child, but not to extend to “kill” myself.
Regards,
MNM
MNM says
I’m wondering if there are people out there who managed to somehow get back to normal after a while .. I mean after stopping taking the drug.
I deeply regret it now.. and I’m terrified that I may never get back to my normal self… ever..
MNM
Denise says
Same. I can’t not live in the condition I’m in from lupron.
Kim says
I am here wondering the same thing!
Lisa says
Anti depressants took me out of the worst of it. 22 years later still having depression and will be on meds the rest of my life. Also get sporadic injection site pain.
Denise says
I’m here asking for help. Ive been on lupron for 6 months (with 6 more months to go) due to severe endometriosis and growths on uterus. Since my start I now have almost no memory ( can’t remember conversations, I stumble of finding words when speaking), I started with peripheral neuropathy only for it to get worse now with restless leg syndrome ( alot worse than I ever thought constant movement in both legs , can not calm my muscles to relax, therefore I can’t sleep and often stumble when I walk) now the eye twitching and facial twitching has started, severe headaches, nausea, sweating, hot flashes, confusion, insomnia, and I am just mentally and physically not me anymore. I can no longer do my job as required. Noone understands what I’m going through so they assume I’m having some sort of mental breakdown. I’m now on 3 different meds to combat side effects. I have now gone into b12 deficiency, my teeth started cracking and one fell out (bone loss), and my blood test also showed I’m pre-diabetic now as well. I’m embarrassed to go in public because of my muscle twitching, memory loss (can’t remember words to speak properly and I’m and educated woman with 4yrs of college at rutgers). I have another surgery Jan 3rd. Please help. Most of these symptoms are permanent. I will not live like this, I can not. Is there anything to help????
Edna says
I also been having all this issues, I had terrible eye twitching for 2 months, my ophthalmologist told me to drink Tonic water and it solved the twitching for good. I’m still suffering from all the other side effects from Lupron but at least my eyes are fine now.
Jeannie ammon says
My daughter, age 37, suffered a severe stroke on December 3rd, 8 days after a Lupron depot injection. The doctors have not been able to say what caused the stroke.
mike sisk says
Been on it 15 months for prostate cancer. It is he’ll.
caitlin s mckeith says
I’m 29 yrs old and i have been living with a life of being sick. i started my period when i was 8 yrs old and its was always bad, bleeding heavy and long and being stuck in bed in fetal position. At 15 i was diagnosed with cervical cancer and had surgery and meds to take care of it, and its was beat but the bleeding and pain continued. By my 20’s i tried every birth control known to man but my symptoms just got worse to the point that i was bleeding 10 months a year and on morphine a perc’s to ease the pain. i then had exploritory laprascopic surgery and was diagnosed with endometriosis, polycystic ovarian syndrome, double canalled uterus, and my eggs dont release. i was put on lupron the first time, after my surgery to remove the endometriosis didn’t seem to work for long and my symptoms came back 2-3 months after. the lupron didn’t not seem to work because i keep bleeding for 6 months. so we stopped and tried another brith control, and continued with the horrible symptoms, but also developed new ones. depression (which i have been prone to since i was young due to a life of pain) and head aches , body stiffness and pain, severe back pain, vision changes, hypertension and the list kinda goes on. Because of my history being long i atributed my new symptoms to previous problems and not the new med i was on. i was refered to phsyc and started antiphsycotic meds. i went through a bunch of different meds, ups and downs before i started to get a bit better mentally but i found i was numb and didn’t care or stress out about much, but the pain and bleeding continued all the while, i had also been through about 30 jobs at this point and refused to give up and was working for the government at my firehall as medical dispatch.i was sent back to my specialist after seeing phsyc and she convinced me to go back on lupron because she thought alot of my pain could have been getting worse to deppression and now realized it was more severe then she thought and she did not want to do a hysterectomy. i started getting dehabilitating migraines and i couldn’t see on some days, had double vision or drunk vision, and i then started lactating like i was pregnant. my doctor said he suspects a brain tumor. i was sent for a ct’s and they found and small tumor in my pituitary gland and sent me for an mri for a better look. i was put on a medications to prevent the tumor from growning anymore and to stop the lactating and have been trying to manage the migraines for years now. i have been on lupron for 4 years and had no clue this whole time that this was the cause of my problems. i have lost my high profile job due to sick days. i have been through 30 more jobs since. i just got word yesterday that i need to come off this medication and have my womb and cervics takin out (which should have been done in the first place), and they have now found a lump in my breast and i have to go for a mamogram. i’m trying to start a new carrier, while working a second job because i refuse to give up but i’m prolly going to lose that to. i live everyday being 50 pounds more heavy then i use to, i’m stiff and in pain and can’t get out of bed some days with back pain from hell, i have a rash covering my body, i getting allergic reactions almost daily covering my body and have to go for allergy testing for that, i live with a brain tumor doctors don’t want to take out for which i am in the hospital 3-4 times a month with migraines but have headaches daily, i’m a emotional wreck and can’t handle much i have been living on meds and i have seriously consider suicide so many times just to stop the pain and to end the burden i am to those around me, my soon to be husband the most. its almost worse watching what this does to him all because i needed a hysterectomy and my doctor didn’t want to do it and wanted my to try this great drug. i fear for my future, i fear i will lose everything and i’m not ready to give up! i need hope its the only thing keeping me alive. please if you have any ideas to help me make it through this please email me. if i run in to money problems has anyone heard of assistance programs or lawyers fighting the results of this in manitoba canada . Also has there been any other reported brain tumors or breast cancer as a result of this drug?
Alan Fine says
I wondering if anyone has worked with a Dr that is experienced in treating women who have been exposed to Lupron and are critically sick from it. I’m asking for a chosen daughter, only 24 yrs and heart breaking debilitated from 2 Lupron injections.
Sincerely,
A Fine
Michael Villanueva says
I am a clinical psychologist and a week ago I never heard of Lupron. Now I have a young female client with a host of conflicting symptoms. I map brain and routinely do QEEGs. I have never seen a cortex in so much disarray. You might want to get a QEEG done and have the raw EEG data analyzed — do not just get a set of Z normed maps — those will be useless in this case. I devised a biofeedback / neurofeedback protocol for my patient. We are only two sessions in, but the brain, as damaged is it appears in the raw recording, is starting to respond. I do not know if my course of action will ultimately prove correct, but at the least a QEEG can provide substantial information regarding symptom expression and where the most severe disregulation lies. Like your daughter, my client only had two injections 30 days apart. I have never seen a 19 channel recording of the human EEG this disregulated before. Best of luck to you.
Jess says
I had an injection every two weeks for 4 years where are you located I can’t believe what mine would look like.
Thanks jessica
Dionne Loudenslager says
I took Lupron injections 22 years ago. Had every possible side effect you could have!! Plus, I am still being diagnosed with new “diseases” everyday! Just this week degenerative disc. I have arthritis, fibromyalgia, autoimmune, crohns, carpal tunnel, rynaurds, neuropathy, vit d defecincy, b 12 defecincy, seizures…. this is just to name a few that I deal with everyday. I had a hysterectomy, bladder supension and sling last year because it just stopped working. Had a dr tell me “have something major wrong with me but doesn’t know what it is because they have not discovered it yet! Probably born a gerantion to soon.” He is at the Mayo Clinic in research. I think it is the Lupron!
Nothing I can do about my health at this point but would like this to be off the market so know one else has to go through this.
Raiza Pelaez says
My 12 year old niece had like 5 episodes of numbness on the left side of the body, including leg, arm, face,twisted tongue, headaches and vomiting. This nightmare started last year, when her mom, my oldest sister was fighting stage 4 Gallbladder Cancer at that time.. Every time this episodes happened she was taken to the ER, but she was sent back to the house..The doctors said that it was probably migraines. My sister passed on 06/25/2016 after battling cancer for a year. My niece had this episodes repeatedly and with more symptoms every time. The last one sent her to Emergency Room at 3:30 am on February 9. When I got to the hospital at 6:00 am, my little niece was in coma. I couldn’t understand, I was in shock, I was frozen. This innocent little girl who went through the worst trauma a child can ever go through was now fighting for her life in that hospital bed. She was transferred to Nicklaus Children Hospital, and she was in comma for 3 long days.They did all kind of testing while at the hospital including CT, MRI of The Brain, EEG, Trans-cranial Doppler, Pelvic Ultrasound, Lumbar tap, labs , they did everything. They did said there was an inflammation on the Brain that caused the seizure and the EEG results came back abnormal.. To make the story short. My 12 year old healthy niece was diagnosed with Hashimoto’s Encephalopathy a rare neuro-endocrine disorder. The connection with all these stories my little niece was under treatment with an endocrinologist for “PRECACIOUS PUBERTY”. WAS THIS TREATMENT REALLY NECESSARY? IS OKAY TO RISK A LIFE OF AN INOCCENT LITTLE GIRL? UNFORTUNATELY, THE PHARM COMPANIES HAVE MILLIONS AND CAN BUY WATHEVER THEY WANT, WE HUMANS DONT COUNT, THEY JUST WANT MONEY$$$$$ THEY DONT CARE ABOUT THE HUMAN’S LIFE. THIS IS SAD, BUT IT IS THE TRUE
Walter says
Since radiation therapy for prostate cancer, I’ve had 3 quarterly Lupron injections. Other than hot flashes, I’ve not noticed any negative reactions but after reading these horror stories, I think I’ll decline further injections.
Would like to hear from other men in similar circumstances.
Barney says
Had prostate killed in Canada HIFU Clinic in 2009. 2 years ago PSA
went up to 38. Started Lurpon every 3 months. First shot brought PSA
down to .01 and stayed there. Have hot flashes large belly and loss of
muscle mass-but I am 80 years old and was told about these symptoms. Would I do the same over-probably. Prostate cancer
dying is not very pleasant.
Edna says
I had 3 rounds of Lupron to suppress my ovaries after a Doble mastectomy due to breast cancer and I never felt so sick in my life, I suffer from electric shots on my legs and arms, extreme muscle and bone pain, sometimes it’s so hard to walk up the stairs or even get out of bed . I’ve hospitalized many times and Dr’s can figure out what’s wrong with me , I’m tired of taking pain meds that only masque the problem, I haven’t been able to work for over a year, my oncologist denies it’s from Lupron but I’m 100% sure it is. I can’t even apply for disability because I don’t have a diagnosis, I’m desperate. :'(
helena r says
I have been on quaterly shots of lupron for over 10 years. My muscles and joints hurt. I have lost my quality of life. I have a desease called intravascular leomyomatosis. It is over production of estrogen that creates tumors inside my pelvic veins. This is the only medicine that keeps my tumors small. Surgery is risky and out of the question. I am filling x disability. I have pelvic pain
Susan says
All this has saved my life. I am going to refuse this treatment and its side effects. Short and long term. You everyone who has written here, I am so sorry this has happened. But thank you thank you for sharing. ♥️
Beth says
I see myself in all of you. I also took Lupron in my late 20’s and have never been the same. By the 3rd injection, my symptoms returned. My doctor, who was at the “Top of his Game” convinced me to continue with the remaining 3 injections. My intuition told me NO, but I trusted him. I think we should contact the law office of Girardi & Reese. I WILL BACK ALL OF YOU and so will my medical records. The Doctors that we put our complete trust in gave us those shots under “Uniformed Consent”. I was told that it would put me into temporary menopause and I would just suffer from hot flashes and my period would stop for 6 months. Well, after my first shot 9 months later, stillness period. Then I was put on a med to start my period and it did not work. I now suffer from Cyclical Vomiting Syndrome, Global Gastrointestinal Dysmotility, Seizures – Tonic Cloning w/ Todds Paralysis, Complex Partial Seizures, Syncope, Anorexia, Bone Pain, My Teeth are falling out, the list goes on and on. No one can pinpoint the cause of my mysterious medical illness. I am sure, there is one family member that thinks you are a “Drug Addict”. I wish you all the best.
Andre Gentile says
Several of these stories could be me. Yes, lupron ruined my life and I have a host of other health problems. Doctors tell me I if I don’t take this drug i’ll be dead in two years. I have prostate cancer of the bones which is in several locations. I’m a 58 year old male who has had prostate cancer for 6 years. I have taken Lupron for 4 of those years, and I am resistant to this drug, but still take the shots every six months. I acquired septic arthritis about one year ago which triggered several problems. The in fections settled in my hips which has resulted in both hips being replaced. I will be going for my 4th surgery in September to repair my right hip which was severly damaged due to the septic arthritis. For the last 8 months I have wondered where this will all lead to. I have a strong support system and really want to see where this all adventure ends. I strongly recommend the Simpson Oil. Can,t stress enough a strong support system. If not for that I may have passed on years ago.
Phil huttash says
Since Lupron shots started besides night sweets I have had a troublesome breathing problems. Amy one else??
Kay W says
I had 3 monthly injections to see if my endometriosis symptoms were reduced by artificially inducing menopause. About a week after the third injection I started getting palpitations whenever I laid down. This was fairly intermittent to start with, but now 4 months on and it’s every night. Sometimes I wake up (or just sit bolt upright if not quite asleep) and can’t breathe properly. I’m on beta-blockers. I’m seeing both a cardiologist and doing CBT as they think it may be stress related. I don’t feel any more stressed than I have for the past few years and am certainly not a fretter. Although I’ve had various ECGs, an echo, blood tests I’m still convinced it’s these injections. I see my cardiologist in a few days with results of a 24 hour ecg ( I didn’t have an episode that night – typical!!). I hope he has researched this drug and will investigate further. I now have further worries as to what else I might develop after reading all these stories. It seems that the symptoms and illnesses caused only get worse, not better as time goes on. I worry that I might not wake up the next day so don’t like lying down to how to sleep.
I’m in the UK, BTW. My injection seemed to be administered like it was just paracetamol…..no issues.
Emma says
Hello! I’m in the UK too and had Lupron for endo.
I’m so sorry you’re going through this too.
I wondered if you knew of any UK online Lupron groups? I’m feeling so alone with all of this and not getting anywhere with the doctors. I feel like I’m going to die too. And no one seems to take all my symptoms and how bad the situation has actually gotten- they didn’t believe I was in pain for 10 years with endo- why would they start believing me now?!
If you do know of any groups or want to get in touch for support just let me know.
Emma x
Melissa B says
I started taking lupron in 2010 due to endometriosis and was told it would help me have a baby. I immediately became so depressed I was put on antidepressants and I’ve been on them ever since. I since have gained weight until I was over 200lbs, had relationship issues related to depression, quit a job from my depression that I worked at for almost 9 years. I was always average to skinny before. I have to take phentermine just to not gain weight. I’ve had testing done on cholesterol levels and my thyroid. My thyroid levels are low end of the normal range, My blood sugar was elevated and cholesterol was higher than average. I have a difficult time with short term memory, where my brain becomes so fogged, it takes me forever to remember what I was thinking just a minute ago. I recently started having very sharp pains in my joints, I have been to physical therapy for a Nerve problem in my back that has never fully went away, I have really bad legs cramping all the time, severe depression, severe headaches (I take tylenol daily), decreased hemoglobin levels, hot flashes have happened a couple times, I have been to ER for dizziness, I am ALWAYS tired, and am concerned it may have effected my bone density. This product SHOULD NOT be on the market. I have taken 3-4 injections shots given at my Dr office beginning in 2010. They were the 3 month shots and roughly lasted 5 months.
Calvin Sims says
To Whom it may concern:
I Calvin Sims am faced with many challenges and obstacles trying to ascertain representation due to the fact that I was administer a Lupron shot for prostate cancer and the results of the six-month dosage have made me unable to ever walk again. As a result of me not being able to walk due to tearing down muscle tissue because of the Lupron shot I got pain in my legs that ended up being clots and then had to get a mesh blood clot blocker put in. I went from riding horses to being pushed in a wheelchair. Can you assist me or guide me in the direction of legal representation.
Thank you-
Calvin Sims
Emma says
Where do I start?
I was put on Lupron for endometriosis, the morning after waking up from my second surgery. Hazy and groggy I asked what they were injecting me with “a hormonal treatment to help your pain and help you have more time to have a baby” I was NEVER told it was chemo, it was given a random name so I couldn’t research it. I finally found out what I was given for 6 months and low and behold- Lupron.
I passed out after every injection, I slept continuously and uncontrollably then didn’t sleep at all. The initial side effects were hideous, hair loss, breasts disappeared, weight loss, personality loss. PAIN so much pain, bone pain, joint pain, EVEN WORSE pelvic pain, nausea, electric shocks in my brain, my teeth were rotting. The list is endless.
I haven’t had an injection for 2 years and I am still dealing with these side effects, I’ve now been diagnosed with fibromyalgia, degenerative discs in my neck and lower back, I have severe intolerance for sugar (even gluten free bread), raised rheumatoid factor, celiac disease, sight deterioration, insomnia, I’ve had 4 miscarriages in a year, monthly tooth abscesses, headaches, anxiety, I have confusion, lose my words, memory loss- I can’t even say the alphabet. I’ve barely left my bed in years and I’m 27 years old. I can’t sit on the sofa because the discs in my neck are so bad it leads to a frozen shoulder and trapped nerves. I can only lay flat in my room and stagger to the bathroom and back.
I feel like I’m dying. The doctors have no idea what to do with me.
I don’t trust western medicine at all after being butchered during surgeries and plied with toxic drugs, lied to and have been treated horrendously start to finish.
I can’t afford any treatments that actually work for me and my pain, like acupuncture, tissue massage, hydrotherapy, CBD oil, supplements and organic food- because I haven’t worked in 4 years and now I can barely walk.
This drug has robbed me of my life and from the very moment I was injected I was NEVER the same again. I feel about 80 years old, when I am 27. I dread what I’m going to feel like at 50 years old.
What can we do? How do we sue them? How do we stop them from harming other people?
Karla Latendresse says
2.4.17
I took first lupron shot at age 31 yrs for endometriosis. I was never told this was a form of chemo.and was only told I would have menopause symptoms. However, I was already having menopause symptoms at age 31 with the hot flashes, etc. I was dx with endometriosis at age 20 yrs d/t a severe MVA that almost killed me because of endometriosis and horrible, excessive periods.
I was told after the MVA my chances having a child was zero to none. The lupron did work for the endo. and excessive bleeding and I felt great while on it, increased energy, flet lIke I was 20 again and that was great. I did notice the brain fog, had some stuttering at times
And leg weakness. It has been hard for me to tell until now that it was the lupron side effects and not the MVA. I have went through menopause and have hardly any hormones, testosterone =12, estrogen =11 and progesterone =0 ????? These are extremely low for some one my age at 46 yrs old? I am a nurse and I have seen plenty of labs on female patients that are post menopausal there labs are higher than mine…..The reason is lupron Blocks testosterone! !!!! And testosterone
Makes cancer cells grow! I have had a rash in my Palm for about a year and weird onset of pain that would come and go in feet, ankles,wrist,knees,pelvis, neck, and low back,hips
I have battled depression, weight gain, fatigue,mood swings.
I’m am now waiting on results to see is I have psoriatic arthritis which is an auto immune that also comes with psoriasis, I have psoriasis on my Palm and my toe nails.
The only good thing from taking Lupron has been my Son that I had almost 4 years after taking Lupron. I however am giving God all the glory for giving me my child. I only took 2 injections of lupron would not recommend it to anyone period. I don’t think providers are explaining short/long term effects of this drug.
I think pre testing and post testing should be done of hormone levels before lupron being given to any patient. I know I didn’t have labs checked before my injections and at the time did not work in medical field and didn’t know what questions to ask either.
My prayers are with all of you, may we find some answers.
KL
PAUL STAPLES says
Thanks for puttig up this wabsite, i am a 65 yearold man with prostate cancer and was talked into taking the 6 month lupron shot, its messed with my blood pressure anxity enegry sleep. i have been working out hours a day to neutrelize the side effects , diazepam works well with the side effecte, i am waiting for this shit to get out of ny system , 4 months gond buy so far,, i aslo wish more men would post here, i pray for all of you.this shit should be outlawed
Arlene Cavaretta says
My husband had one Lupron injection on February 8, 2017. He died of a massive bleed to the left side of his brain on February 17, 2017. He had Agent Orange related prostate cancer that had spread 8 years after surgery and chemo. Now I have to fight the VA to connect his death which I know was caused by this drug!
He didn’t deserve this.
Tasha says
Hello everyone. I am scheduled to have the Lupron shot next week on Monday for endometriosis treatment but after reading these post, I am now skeptical. Is there anything else any of you recommend for endometriosis so I don’t have to get the shot? I’m really scared now and I’m only 27.
Jaime says
I hope you didn’t do it. It can be very hard in the face of being told your pain might be resolved, but it’s not worth it. My life feels destroyed since I had my single shot of Lupron. I thought it was destroyed by Endo, but that suffering hasn’t ended and has only been made worse.
Lauren says
I’m about to have my second laparoscopy for endometriosis, but this time with a deep excision specialists. He has by far been the best doctor I’ve been to regarding this disease. He told me to never EVER take Lupron under any circumstance, and he told me that he can remove all of my endometriosis without a hysterectomy. There are only around a dozen doctors in the entire US who know how to perform deep excision for endometriosis, but it’s the only treatment that seems to make sense, and he is definitely the only doctor I’ve found yet who seems like he knows exactly what he’s talking about. Try to find one of these doctors if you possibly can! He says his recurrence rate is less than 5% over the 19 years that he has only treated endo, and that those 5% tend to be the women whose insides have been ravaged by multiple prior failed laparoscopies.
To the rest of the men and women on this page, you are in my prayers, and thank you so much for exposing this horrible drug. You never know how many lives you could save.
Mariam says
Hi Lauren. Can u give me your doctors name?
Mariam
Carmen says
My husband died March 3, 18. Acute blood lose anemia. Sudden kidney shut down, blood clots. Took Lupron for prostate cancer. 5 months of shots.
Took him 7 days to died in the hospital. One day only in the hospital $110,000.
Our insurance paid it all. Looking for a lawyer to sue Lupron.
HeatherCR says
Lupron! I was 39 in the fall of 1994 when after years of horrible periods due to huge fibroids, the doctors at Bethesda Naval Hospital granted my wish and authorized a vaginal hysterectomy! However, I was required to have 2 injections Lupron Depot before my surgery. I was forewarned that this medication had some side effects and everyone reacted differently. No one mentioned the immediate life changing physical and mental hell this medication would wreak on my body and mind, or the unknown problems that would continue to pop up 20 years later!
The initial “False” menopause came on hard and horrible with every horrible menopause symptom hitting me all at once and lasted close to 2 years! My sex life was a joke! I had been married to my husband for almost 20 years and thankfully he loved me enough to stay and help me through the depression, lack of desire (on top of have my vagina being butchered during the surgery! ) At 45 I was diagnosed with Fibromyalgia, Migraines, and Chronic Fatigue Syndrome and was forced to retire from a career that I loved. That retirement also meant a significant loss of income for my family causing us to lose our beautiful home and forcing us into bankruptcy. This once very proud, happy, hard worker, descended into a guilt ridden depression that took years to climb out of.
Today, in 2018, I have been collecting Social Security Disability for almost 20 years, not something I ever expected to happen to me! Fortunately, I am still married to my wonderful husband of over 40 years, a man who has lived through and understands the horrors of what happens to someone subjected to LIFE AFTER LUPRON!
I know that any lawsuits started now would never result in any compensation for what I went through, but this has to STOP! Please, someone stop the pain and heartbreak this drug is wreaking on the unsuspecting! If nothing else, make patients read these testimonials and sign statements to that effect so they KNOW ALL sides, not just what the doctors tell them!
Stepping down off my bandwagon now….
duane hall says
I am a male with prostate cancer. My oncologist and urologist recommended a six month Lupron shot. Appx. 3 weeks after the injection I had an adverse reaction. I woke up after two hours of sleep in a full blown anxiety attack. It felt like my entire body had been hit with 600 volts of electricity. I also had frequent thoughts of suicide. I fired my oncologist and my urologist and subsequently hired the services of another oncologist. I related my story to the new oncologist and he stated that six month Lupron shots are barbaric. The oncology clinic he works for will initially give a loading dose and see how the patient reacts to the drug. He switched me to firmagon which is administered subcutaneously in the gut. The side effects of the firmagon are quite similar to Lupron however the injections are administered monthly. The former oncologist and urologist also stated that the 45 radiation treatments would be a walk in the park. LOL nothing could further from the truth. My point is it pays to do your homework. After I 86ed the two previously mentioned doctors I made an appointment with an integrative doctor. He prescribed 50000 ius of vitamin D3 on a weekly basis. I noticed after taking the vitamin D it helped considerably with the pain my body was experiencing. He aslo recommended glutathione which is a powerful anti oxidant. He stated most cancer patients are deficient in both vitamin D3 and glutathione. I sincerely this information is helpful to patients going through the agony of Lupron.
Kayla says
I was diagnosed with precocious puberty in 2nd grade. I took Lupron for 4 years every month. I dealt with all the side effects that the drug listed to happen at the time. I now am 22 and feel like I have the body of a 70 year old. I truly believe it is responsible for my hypothyroidism (the doctors cannot find out the cause), oxalosis of the kidneys, constant migraines and cluster headaches, abundant facial hair as a woman, and much more. My parents did what they thought was best for me at the time but this drug has ultimately ruined my life. I was so fun and energetic and ambitious. I had so many dreams. Now I’m lucky if I can even get out of bed. I’m scared of losing my job because of how much work I’ve missed. Us men and women and especially the families who have lost loved ones deserve justice.
Sam Lucy says
Lister fertility in the uk prescribed synarel nasal spray/ nafarelin spray for me and i had a delayed period. They continued to tell me to use the spray but one morning i woke up feeling really dizzy with vertigo like symptoms 24/7. I have also been diagnosed of migraines and i constantly have this vibration sensation in the left side of my head and a feeling of a swimmy head with severe neck throbbing and pain. It is a nightmare and i have had a lot of mental breakdowns because of this.
Belinda says
Dear Sam,
I did my first round of IVF at the Lister Hospital in 2001 and they gave me the Lupron spray as I had mild endometriosis. I have had migraines since my late 20s (only once or twice monthly) but I got them every day during my entire IVF protocol. I too got hot flushes.
I returned home to Australia and did another round of IVF again with Lupron. Since then (2007), I have suffered almost daily migraines, anxiety, depression, fatigue, now have a pituitary microadenoma, nodules on my thyroid and hypothyroidism. I once used to be a happy, healthy, slim person with hopes and ambitions. I have not worked for many years as my health has been utterly destroyed by these IVF drugs. To make matters worse, I did not get pregnant and decided I couldn’t face another go. I wish I had known what this treatment would do to me. I have spent thousands of dollars on doctor’s appointments, MRIs, ultrasounds, alternative medicines and there are no answers for my condition. I just tell people now to avoid IVF.
Kind Regards, Belinda
Kelly says
I received Lupron Depot shots for 6 months around 2004 or 2005 and I had horrible hip pain, knee pain and my feet hurt all time. I still have those issues today. Has anyone looked into this? My doctors say it isn’t from those shots but I never had any issues before them. He wanted me to continue the shots for another 3 months and I refused because I felt so horrible. I am 57 now but I feel like a 100 year old.
Crystal says
I was 12 and had Advanced endometriosis and fibroids so they decided to prescribe Lupron injections every six months until I was 18. I battled severe depression and suicide attempts through that time that was chalked up to “being a brooding teenager”. At 18 my uterus had turned into almost a gel and my ovaries were like rocks covered in cysts and I had to have a total hysterectomy . I had many Health issues but it 21 I ruptured my T6 T7 disc which a healthy 21-year-old should not happen to. I was lifting a 20 pound container of protein powder at work when my back went out. That was just the tip of the iceberg that is led to 10 years without employment, IBD, arthritis, Asthma, and a number of neurological issues including migraines. I’ve had to have my Almost every removable organ removed. I will never understand why this drug is still on the market after taking so many bright futures away. I just hope that one day the makers of Lupron are held accountable for everything they’ve done.
Laura says
I totally understand what you are going through I have just had my 3rd Lupron shot and my life is hell. Could I ask what neurogical problems you had or have as I have just been fast tracked to see a neurologist and I am seriously scared that this shot as given me a serious maybe life threatening condition.
Irene Canel Petersen says
Dear Ms. Millican: Thank you for your tremendous efforts on behalf of all of us victims of Lupron Depot.
Last year I wrote about my story and was accepted to Lupron The Original
I am 67 years old and suffering from memory loss, had pituitary surgery, very bad disk problems in my back, incredible arthritis through all joints in the body etc, etc. I told my story when I was asked to for acceptance into the group.
The purpose of this note is that now that the tide is turning with the horrors of pharmaceutical companies with relation to opioids, and also the new numbers of progressive women recently elected to Congress–we might have our best chance.
Lets organize to attract more media exposure. I plan to write my story and send it to CNN as I am a frequent listener. Perhaps everyone should try to write one story. Our numbers of victims are in our favor. We need to reach out to the media. Please express your thoughts. I am so grateful for your efforts. Irene Canel Petersen, ireneicp@bellsouth.net
Brian says
Lupron is brutal. Metastic prostate cancer. Worked out 5 days a week. No it’s a true battle to even get to the gym. Total poison
Angela G says
I also Had Lupron and have similar complaints as above emails….. So sad I was given for IVF treatment.. in a mess now and I was perfectly healthy before Lupron . So sad keep fighting for us…
Dave Harnden says
This is the first time I have heard that Lupron had any side effects other than muscle atrophy, which I have. I have been bumming about that, but now that I have read a lot of the other side effects people are having, I guess I just better consider myself lucky. I was diagnosed with terminal prostate cancer 15 years ago, it had metased into my spine, and I had a very high PSA. The doctor figured I had about 6 mos. to live. I am 80 now, and my oncologist recently told me I was in excellent health. I was given 15 radiation treatments on my pelvis, and started getting a shot of Lupron in my butt 3 times a year, ever since. My PSA went to normal right away but about 1/3 of my strength also went away. My hips went out about 5 or 6 years later, and they said it was osteo arthritis. My hip surgeon said he never saw hips worse than mine, there were no sockets or balls left. I had figured the radiation had something to do with the hips going out, but now I wonder if Lupron was the culprit?
Funny thing happened when I started cancer treatments. Up until that time I had been having severe backaches pretty regular most of my life up to that time. Then the backaches went away and I have not had a backache in 15 years. I used to pay a lot of money to my chiropractor, but not any more. It seams I traded backaches for cancer! I had contacted MRSA when I first was hospitalized , so when my hips went out, we decided it may not be the best idea to have two hip surgeries when I already had a serious infection, so I got around with two canes for about a year, then when the second hip went I had to buy a power wheel chair because I was caring for my wife. About a year ago I found my MRSA was gone, so I scheduled my hip surgeries. Incidently, I did not need even one pain pill for either surgeory. But now my legs are weak from using that wheelchair all that time, and I can’t seen to get the muscles working right, and my balance is not great because of it. If I could build my leg muscles back up, I feel my balance might come back and I could walk normally again, otherwise I’ll probably be in that wheel chair for the duration!
Tina Marie Figueroa says
I was put on this for 6 months. Monthly shots for ovarian cysts. I do not have polycystic ovaries nor do i have endometriosis. I was 19 yrs old in 2000 when i was prescribed this as an E3 in the Air force. I have so many of these symptoms.
Emily says
I suffered from an acute onset undiagnosed uterine bleeding disorder from August 2018 to March 2019. They attributed some of the bleeding to large fibroids, but were and still are not able to explain the mass amounts of pain and bleeding. After a series of failed medication treatments (what felt like experiments) and a number of blood transfusions, I ended up in the ED/ICU with 1/3 the average blood volume for an adult female. They proceeded to do a Uterine Arterial Embolism procedure to stop the bleeding temporarily. BUT in order for them to proceed with a hysterectomy, I was bullied into having the Lupron injection before they would even consider scheduling the surgery, before they would even talk about letting me leave the hospital all together- by two OBGYNs, a family doctor and a hematologist. I adamantly had refused it since January, but because I was at peace with having a hysterectomy and didn’t want this in my system (I had done some research on my own- which was harshly refuted by my doctors). Then, I hemorrhaged and was forced into it anyway.
It took one week after having the first shot that my body went haywire. I wasn’t bleeding- no, but the bone pain was so severe I felt like my arms and my elbows and my shoulders were snapped and broken. I could barely lift my toddler from his crib. I cried myself to sleep, I cried at work trying to type on a computer was agonizing. I had insomnia from the pain and from whatever else the chemicals were stewing in my brain. My hair started falling out two weeks into it (which hasn’t stopped yet). I had the hot flashes, I had nausea, short term memory issues. By the time I was due for another shot, I was done. I skipped the appointment altogether, didn’t reply to office calls to reschedule and just waited for one of the doctors to ball up and ask me about it. There was no way. I hung on though, had no more bleeding for another month after (thanks to the equally painful but less of a dangerous Uterine Embolism), got stronger and completed my hysterectomy. It will be about six months since that first (and only) dose (thank God) in July. The hematologist said at that point it should be out of my system completely. I hope she is right. The bone pain stopped about 2 1/2 weeks after I ditched on the second dose. I just pray I don’t have any lasting effects waiting to spring up in the future. I wish I hadn’t felt so bullied and scared and stuck to y guns. I am sure the embolism procedure would have done the job until surgery.
I don’t understand how this shit is still on the market. I was lucky to have such a mild windfall, but what about all the long term patient that’s lives have been upended, over what? Money? People being used as walking science experiments? Its a damn shame doctors just throw around drugs and piddle out the same facts to patients that the drug companies are feeding them. Its sad and disgusting. Hope that extra $2,000 keeps your pockets nice and warm.
Judy says
I have read all your stories. Do any of you use hormone replacement therapy while using Lucrin? After Lucrin you are in menopause and need hormones!!! Are doctors telling you this?? I am looking forward to hear reactions from all women here…..
Haley says
I don’t think they have, honestly.
I posted below that I am lupron to induce early menopause because I experience all of these symptoms naturally due to a disorder called PMDD.
I will be getting a total hysterectomy/Oopherectomy as it’s the only cure.
It’s saving lives. No drugs are without side effects.
Dr. David Healy says
Hayley
I am sure readers will be pleased for you. I don’t think anyone figures no-one is helpled by Lupron. I think what causes people to be upset is they had no warning this might happen. Often they were frogmarched into treatment. Knowing the risks it is quite likely some of those injured would have still gone ahead. Whether they would be a better place now, who knows.
Part of the problem is it official policy from governements, regulators and medical bodies that you should not be told about the kinds of things that have happened on Lupron or the risks of Post SSRI Sexual Dysfunction that happen with SSRIs – that lead people to kill themselves and terrible effects not just on our sexual life – the drugs can wipe out our emotions permanently. Its like going blind or deaf. We have no treatments for this. The problem has been known about for over 30 years but no youngster with minimal things wrong with them that will likely clear up without pills is told about this.
What’s your view? Should people be told?
David
Randy says
Hell yes we should be told!! It’s insanely the way I was forced to take this dam drug!! I suspect MD s getting kickbacks from peddling ng this debilitating drug!! Money is the root of it all !! I read an article on how it increases patients compliance!! After the first shot. The rest is easy!!! You have taken their will and all the fight out of the hem. Don’t trust the hem!!! I wish I had not. I will not ever have another lupron shot. Ever!!!! It’s killer ng me!!!
Ken says
I had my 4th shot of Lupron 3 weeks ago to treat prostate cancer 2 shots left to go which I will not be having .Since the first shot quality of life reduced little by little every day ,as of today I I am becoming totally useless just no energy to do anything .Wish I never started injections never had any problems before injections played golf 3times a week nowI cannot even swing a club .Fed Up
Olivia B says
I’m transgender and started monthly Lupron injections in November 2018, to suppress testosterone levels. My last injection was in July 2019. I skipped the August injection due to these symptoms: extreme thirst (I need to drink over a gallon of water a day, even if I’m just sitting around the house); extreme thirst at night, awakening with dry lips, mouth and tongue, even though my bladder is full); increased bowel movement frequency (6-8 a day); constipation if my hydration levels fall; difficulty falling asleep; frequent night time awakenings due to need to urinate, coupled with difficulty falling back to sleep; greatly decreased ability to digest fats; queasiness and headache from even one alcoholic beverage; and hair loss, extreme scalp dryness, and raised rashes on my scalp. By the way, diabetes has been ruled out by my doctor and Endocrinologist. Unfortunately, the other 2 T blockers typically used by TFs also caused me problems, which was why I started on Lupron to begin with. It is strange that the manufacturer and other formal medical web sites show these symptoms as being very rare. I wasn’t too concerned about starting on this drug as a result of the information from those sources. But, these conditions started within 3 months, increased in severity, and have continued now 7 weeks after my last injection. Needless to say, no more injections for me, and I hope my health, and the health of others who are or were on this drug, has not been permanently impaired.
Anna P says
I just did a round of lupron injections for IVF. I had cetrotide injections which are similar to lupron for 7 days following with 40 units before egg retrieval. Throughout the whole process i had severe headache and was weak, depressed, tired. Now for the transfer they put me back on 10 units of Lupron a day for the next 16 days and after 2nd injection i was bedbound- called the Dr. He said just hang in there its normal. But i was so confused- how can something make you feel so sick?????? Second day i had emotional breakdown, threw a phone at the wall, suicidal thoughts, hot flashes, joint and muscle pains.- this has NEVER happened to me before. Called the Dr. In the morning and my husband and I insisted to not do those injections which he agreed to quickly and said it s not a problem -we can just do natural transfer with HCG shot(are you kidding me?). I am a perfectly healthy 28 year old female that does IVF because of husbands issues. Im shocked at how many side effects i got from it and i do not reccomend anyone having it and look at other options
Mike says
I been on Lupron for over a year now and my joints are getting older day by day before my time, after cancer was found in my limpnode, now MRI showed cancer in hip and pelvis so now going to take a CT scan to confirm results.
I do not trust the medical doctors at kaiser because you have to tell them what you want almost like going in drive up window at jack in the box,LOL.
And I’m sure the doctors receive money for our misery.
I seen my father die miserable from chemo and I will refuse to follow this game.
Lupron is keeping testosterone low but cancer is on the move, what should I do? Just stop all treatmemt?
Willow says
I am sorry to hear what each of you has gone through. In the hope of helping someone make a decision on whether or not to take Lupron, I decided to share my story seeing that more and more people are being affected. I have had similar side effect to most people here, but I also had to state that Lupron “possibly” saved my life. I was on a blood thinner (that doesn’t have an antidote), and the gynecologist I was referred to decided to do a last minute biopsy giving me very little time to process what was going on.
Less than two hours later I was in the E.R. I had several doctors converge around me and let me know that Lupron was my only option to at least stop my period, it did within 30 minutes! After the injection I had to wait out for the wound from the biopsy to stop bleeding on its own. I went home and could smell everything. I had to stop eating animal products. I had to shower several time a day to keep my own company. A few days later, I felt a sharp pain on my right thigh and it’s as through my muscles had “collapsed” coz I could feel a ridge. The whole right side of my body went numb. Periodically I would get sensation, but the scary part was waking up at night and finding that I could not breathe from my right nostril. Two years down the road I feel the Lupron is dissipating from my body and my right –previously numb side – has excruciating pain with thunder clap migraines, aching teeth, and the works.
I saw a doctor today and all he could say is Lupron is such a strong Chemical, I don’t know how to help you. I believe him. I managed to get a requisition form from him to get my hormones checked.
Some of my pain relievers have been taking supplements like multi-minerals/vit, Iron with vit. C (at least 2hrs after anything with calcium in it), iodine, Calcium with vit. D ( Lupron depletes minerals from your body Calcium the most). Yesterday I got a women’s herbal balance. I also took Maca and Ashwagandha separately. The last two gave me some relief at least 6hrs no OTC meds. My opinion is to re-balance hormones and replace vital nutrients. I hope what I shared will help someone. Thanks and Good Luck to all.
sp says
Hi all,
I am in the same boat as everybody here so do not want to repeat anything. In brief I am in big pain. Now as many here think that Lupron caused autoimmune issues in our body,has any one used any immune system suppressants like Hydro cortisone,Methotrexate etc? if yes did they work? I need to know.
please contact me at sp1 at live.ca, Replace at with @.
Rick says
I am finishing up a two year stint with Lupron for Prostate Cancer in June, 2020. I had the usual side effects of chemical castration and my PSA levels have been < 0.1 since the first 6 month shot. The only side effects (I think they have been caused by Lupron) I have found from it that is very annoying is Cluster Headaches (somewhat similar to Migraines but more painful) which periodically re-occur one to several times a day and also a constant background headache which is bothersome but not as painful as the cluster headaches. Both occur on the left side of my head behind my eye.
After a year and a half experimenting with various drugs for the headaches, my neurologist recommended Emgality, a relatively new drug that is primarily prescribed for migraines but also approved by the FDA for cluster headaches.
For the last 5 months, it has worked for the cluster headaches – I haven't had a single episode. It doesn't seem to work for the background headache but Tylenol seems to – at least for 4-6 hours per dosage.
As to the rest of the symptoms that have been listed on this site, I haven't had any of the more serious ones yet. However the overall impression I have taken away from the listings is that I should probably treat my urologist's comments with a grain of salt.
Thank you all for your comments.
Patricia Vanover says
I’m 49, I had endometriosis. A few years ago I had surgery to remover cyst and scar tissue. They gave me 2 Depo lupron injections 6 months apart. Then I decided to eat better and I was fine until Sep 2019 when the cyst came.back. The gave me an injection in Oct becuase of the pain but it got worse so I had to have a hysterectomy in Oct. Kept 1 ovary. What they didn’t tell me is I would have to get another infection then go on the pill. After that shot I havent been the same. Joint pain, swollen ankles and wrist, foggy memory, headaches, night sweets, dizzy, so hot I feel like I could faint, weight gain, facial hair, acne…never had acne like this. Uncontrollable crying, I don’t care about anything, I’m not the same, depressed and I can’t stand anyone. No interest in sex either. I need to detox this stuff. Is that possible
GARRY says
Hi all,
life is good but lupron takes all joy from it.
I found i had prostate cancer in September 2016 and had 37 radio sessions,plus what should have been 2 years lupron.However my new oncologist stopped lupron at 18 months i thanked him so much.I have now been off lupron for 2years and my side effects are still as follows,anxiety,depression,headaches,tinnitus.joint and muscle aches,tiring easily,large around my waist,breasts with lumps inside,i do not need budgie smugglers i have no budgies,plus of course no sex since the first shot.
My blessings to all on this site Garry.
Elizabeth says
Hello everyone! I recently had surgery to remove endometriosis from my colon, rectum, bladder, uterus, sides of my pelvic ways, and diaphragm. I’m now getting the pain back and my dr wants me to start on the Lupron shot as soon as possible. I’m 26 and have had to have a lot of surgeries on my legs due to joint and bone issues. Are the risks worth taking the Lupron shots for 6 months? My dr swears by the shots but I’m unsure if I should or not, thank you for your input!
Sahmantha says
Hi, Elizabeth! I saw your post about having several surgeries and also having had a couple of Lupron injections! You also said your Dr swears by “these shots.”
Well, I just had to contact you. I hope you don’t mind. I was a RN for a long time, worked in an OB/GYN clinic, had severe Endometriosis, and so many surgeries it’s ridiculous! I too have had many bone issues as well! I’ve had 15 knee surgeries alone. Plus many others on various other joints, and my abdomen doesn’t just look like a road map, it is one! 😳 I’ve had over 100 surgical procedures! (Minor and major) so I totally get where you’re coming from! My health problems are so outrageous now, I could write a book that would truly be longer than a two week mini-series!
I was on the Lupron for a full year and it caused me a whole lot of problems, that I believe I’m still battling to some degree to this very day! I had my injections back in 1991. So it’s been a good long while. I also had to have a total hysterectomy including my ovaries, etc anyway at the age of 32 without ever getting to have the blessing of children! I’m most certainly not trying to upset you or discourage you. Actually, I’m trying to do the opposite. I just don’t want ANYONE to ever go through what I’ve been through!
I also ended up with so many root canals, that I literally made dental history! I believe, as many of the dental specialists I saw, that those problems were related to the Lupron. So before you get any more injections, I would advise you research dental health and side effects related to Lupron. I have no clue if anything has been documented on this since my nightmare, but hopefully someone has decided to be responsible finally! For you sake and others, I sure hope so! My dental issues continued, and it led to many other nightmares, as well as an incredible financial hardship! Multiple multiple thousands of dollars with insurance! So I just wanted to let you know what you could be facing! If I was you, I would talk to as many professionals about the Lupron as possible and document their opinions! Then read over all of it before you make any decisions! It’s always best to be as informed as possible! I’m so very sorry you’re dealing with this! I will certainly be thinking of and praying for you to get well just as soon as possible! And in the meantime, I hope you feel better and find some really great help and guidance out there! Feel free to email me! Take good care of yourself and God Bless! 🌻
Amy says
I have had two Lupron 3.75 depot injections for fertility treatment. One month after the first injection, I started having liquid diarrhea. I’ve never had any bowel problems before. All tests were negative for infection/inflammation. By the time a got the second Lupron injection I was also extremely nauseous. I’ve also experienced low mood, irritability, anxiety. But the diarrhea is the worst by a mile. I can’t live a normal life. It’s so disabling. I’m not getting any sleep because I need to go to the bathroom through the night. I’ve had it now for 4 months. My last injection was 6 weeks ago. I am hoping the diarrhea is temporary and ends when the drug finally clears from my system. I understand however it can take 6 months before it fully metabolises out your system. I am so exhausted. Has anyone else experienced chronic diarrhoea??
Jennifer says
Hi Amy –
Curious to see if you are feeling better? I had one injection a month ago & not doing another. Headaches, moody, blurred vision & brain fog.
Thank you for response.
Praying this leaves my system soon & glad I read all this and not doing another one.
John says
Do not get stuck being put on this, yes some do ok. But there are many that are going through Hell. https://www.facebook.com/groups/lupronvictims
Danielle L says
Hi! I have been through IVF twice. The first round in 2017 with being on lupron 3 weeks. No side effects then. Then tried again in 2019 and had a baby in May 2020. Although the second pregnancy I was on it for 6 weeks while trying to sync the cycle with my embryologist work schedule. At week 3 I was in severe pain – like my bones were crushing in. By week 5 I could barely walk due to pain. My IVF doc was able to stop it then and slowly the pain went away, didn’t think much of it. Had a baby in May 2020 after this cycle (lucky!), but about 1 month after birth, I had that severe low back and hip pain again. I have constant muscle spasms in back and legs. I have been in PT for 10 months now and have slowly gotten better, but all docs/providers think it’s psychosomatic or some sort of arthritis. Multiple bulging/herniated discs and breakdown of all the vertebrae in my lumbar spine. I’m 32. And I’m and ER physician assistant. I have been almost everywhere looking for answers and I am going to Mayo next week, but it just occurred to me about the Lupron. I never thought to connect it back to that until now… but it does have me wondering, especially with everyone elses stories. Anyone else have severe post-partum pain and haven’t been able to come out of it, no matter what therapies you do?
Patrick gaya says
Thanks for accepting me into this amazing group. I started Lupron injections last year in December and started experiencing pins and needles on both my feet and hands, muscle spasms, muscle pain, dry skin, loss of appetite, feeling extremely cold and fatigue. I’ve been to the E.R about 6 times and found out that my Ionized calcium levels were low. I had such bad muscle spasms I was put on muscle relaxers, stopped working and went on short term disability. I pray every day that these symptoms will disappear. So I discontinued my Lupron shots and was started on calcium and vitamin D supplements. My endocrinologist also did some tests and she found out that my parathyroid hormone is also low. However, what’s disappointing is that my endocrinologist is still denying that all these complications have anything to do with Lupron. However, I feel like they have everything to do with Lupron because they all started after I started Lupron. I was so grateful to God 🙏 that I found this group because it made me feel like I was not alone 🥲 and that there are so many people who are going through something similar. I am now feeling like I’m getting a little better and I’ve been getting some good tips from this group on what to do to get my health back on track and I’ve been receiving weekly Vitamin B12 and Vitamin D shots and thank God the pins and needles have disappeared but I still feel the muscle spasms during different times in the day. I would love to receive some suggestions on what I can do to get rid of the spasms and muscle pain
Sahmantha Cannon says
Hi, my name is Sahmantha and I just happened to come across your site while researching info on my lovely chronic pancreatitis I’ve been battling for awhile now!🥴 Wowwww! What a shock this was too see! I was on the nasty Lupron for over a year to prevent the dreaded total hysterectomy from Endometriosis! Guess what? It didn’t work! I still ended up with the total hyst. including ovaries. The whole deal! But I also ended up with all the horrible, miserable sufferings of LUPRON side effects too, just like all of the stories listed on your site! To be quite honest, I just couldn’t bring myself to read them. It absolutely breaks my heart to hear or see these kinds of horror stories! I actually worked in the Medical profession and was told all the same things, that it wasn’t harmful, blah, blah, blah!
Well, I’m now on full disability due to several different health problems! Too many to list! I actually haven’t been able to even leave my house in the past 16 months at all! I’m definitely going “cabin fever crazy!” 😬🙄🤪.
I’m so very sorry to see so many others who have suffered from the Lupron! At the time I received mine, I was told I was basically a guinea pig, because they had never had any patients take it for more than 6 months, and I was on it for an entire year! Uugghhh! I can’t even express the craziness it caused in my life while on it, and you would think that working in a woman’s clinic that my co-workers would have been understanding & somewhat compassionate! BUT NO!!! It was unbelievable! There were a handful that were great, and I’m still in contact with them, but the rest! Well…., let’s just leave it at that!
I hope & pray that everyone out there that’s dealing with poor health, no matter what the cause, or what kind of health problems they are, that you truly can get help somewhere just as soon as possible! Even kind words from someone make a big difference! A doctor who will actually pay attention, truly listen & hear you, makes a HUGE difference. And I don’t know about the rest of you, but finding that is indeed rare these days! It’s very easy to get bummed out, down, depressed, etc etc, but try your best to count your blessings. No matter how small they may seem, I guarantee if you think about how others have suffered worse than you and what they’ve been through, it really does help make you thankful and grateful for what you’ve been blessed with! Also, giving to others really helps bring joy to my life! I can’t afford much AT ALL!!! But when I can, I do what I can, and it feels so great to be able to bring some kind of hope, bright light, anything to someone else’s life, and any help to wonderful animals too! Pets are FANTASTIC!!! They love you unconditionally no matter what! But only get one if you’re going to love & take care of them the same way! They are fully dependent on humans! But sssooo worth it! 😻! I hope some of this encouragement helps even a little! I truly do pray you all feel better and would love to read that you’re all well! SOON! May you all be tremendously blessed! 💜🙏👼🕊🐾😻🌻🛐💝
Al says
After many years of slowly progressing BPH, an annual PSA check showed a sudden uptick – from my normal 25-year, steady .06, to 3.5. When I mentioned to my urologist that i was also having a little flank pain, he did a cat scan which revealed a few suspected cancer lesions in several bones and some other sites. A prostate biopsy revealed Gleason 8 cancer in 10 prostate sites.
Suddenly i was not just a 75-year-old man in good health with mild rheumatoid arthritis and benign prostate hyperplasia; i was now a metastatic prostate cancer victim. I immediately got an appointment with a highly experienced Florida Cancer Specialists oncologist: he recommended a six-course Taxotere infusion regimen (including prednisone, zofran, decadron and xgeva) and urologist-administered lupron shots every 1.5 months, ‘for the rest of my life’. There was no discussion of possible lupron side effects; it’s ‘just the most common therapy’ for ‘your type of cancer’.
I made it through five months of chemo with only two ER visits and one overnight hospitalization, but weaning off of prednisone side effects (peripheral neuropathy, lymph-swollen legs and feet, swollen hands and fingers) took two more months. Curiously, the prednisone appeared to ‘cure’ my rheumatoid arthritis – all joint pain was gone. Then i took two Moderna covid vax shots.
Right after the moderna shots, my rheumatoid arthritis roared back, and a bunch of other symptoms started up that i had initially concluded were covid vax reactions, but those symptoms kept getting worse. My A1C levels shot up. Advancing numbness in my fingers and toes. Serious leg muscle weakness, plus pain in every joint in my body, made getting up from a kneeling position a near agonizing impossibility. Low (55/39) standing blood pressure. No energy; serious constipation. Balance issues and staggering gait. Burning pain in my lower back and burning pain around my entire waist at the level of my diaphragm upon any exertion, accompanied by shimmering vision and feeling like i might faint.
Reading the posts on this site suggest that these reactions may well be from lupron. I’m scheduled for another lupron shot soon, but after reading these posts, it’s time for a serious discussion with both of my doctors to gauge the pros and cons of stopping lupron.
The point of all this is, if you have cancer (and especially if it’s metastatic), you may be bombarded with a cocktail of chemo and androgen deprivation drugs, each of which list serious, often similar potential side effects. It’s nearly impossible to figure out which drug or drug combination is causing any particular symptom. Unless they see serious blood lab variations, it’s like a wild west shootout. Prayers to all who are going through this.
Peter Rush says
I started Lupron/Casodex October 2021. Finished Proton Therapy April 1. The ADT is just too much. I hate my life. I told my oncologist I wanted off these drugs. She took me off the Casodex, but didn’t recommend getting off the Lupron. I found a Naturopathic Oncologist and he explained to me why and how to get off Lupron. I am doing Vitamin C iv infusions and I’m on supplements to address the hormone and cellular issues. I’m not getting my next Lupron shot this month. I’m going to be fine. I trust what my Naturopath is telling me.
Janet says
I had it is September and my endo pain went from 12/10 to 3/10. But my feet hurt (like planters fasciitis 1000%, just moving them hurts) all my joints hurt (like every vertebrae in my spine), I feel like electricity is constantly running under my skin, my brain feels like it has an electrical net around it, I feel like I need to be tense all the time, I have no fuse (raising to adopted boys with trauma of there own makes this terrifying for me), and I had issues tolerating noise before but now my Misophonia is extreme. I can’t sleep for the severe hip pain, hot flashes, night sweats, insomnia.
I had ptsd, anxiety, and depression prior and this has just made life so much more miserable.
I grateful endo pain (constant empaling every time I sit/have a bm/sex/etc. but man did this give a hole list of other side effects I don’t want to live with.
I hate being a female and being in constant pain.
I’m in the military and I need to make it to retirement but it’s so hard to get out there and run. Working it hurts on a hole different level. I’ve gained so much weight.
I know menopause ages you but I feel like I’m 80 and I’m 36.
When I called my ob for help they shrugged it off, giving me anything would negate the purpose of shrinking my uterus cysts and endo.
I feel like a hypochondriac and a crazy person.
My ob made me feel like I was in a corner and this shot was the only option other than a full hysterectomy. How is that true???
It’s so hard not to feel defeated.
I really hope these side effects ware off…. Or my life will become unbearable.
Paul says
I am sorry to read about the young people on this powerful, debilitating drug. My Lupron injections started after I retired, so I had many good years without the trauma this drug creates. I don’t want to go on taking this drug and really believe Dr. Kavorkian was correct in providing assistance to end of life decision which this drug encourages. The well established practice of prescribing Lupron would be restricted if the person issuing the prescription had to take the drug themselves.
Rebecca hill says
5-21-2022 lupron shot weather for endometriosis or prostrate cancer is nothing except a death pain sentence, My Husband has been thru hell since he first took the shot LUPRON, there was nothing ever said about the pros and cons of side effects, he finished his gamma radiation for his prostrate cancer and still has to continue lupron shots, he has had all the side effects and more, he has fought with this for 12 months, and now he is getting so tired and weak that he don’t know if he will be able to survive with living, this is a very sad outcome when faith are put in doctors for help, and this shot has and is the most devasting shot any one could get, it’s toxic to the body and a death sentence, other is 22 thousand dollars a shot and it gets charged to medicare and or billed to insurance and !!!!!, very sad, BEWARE OF LUPRON SHOT period
Holly says
Further to my previous main post – I am also ridiculously emotional and tear up or full out cry daily, at both happy/touching and sad/upsetting things. And have inexplicably started waking up about 5-6 every morning, even though I am off work and when I could easily sleep til 10 up til now.
And that my gynecologist 10000% did not make me aware of the breadth of side effects or dangers of this drug – other than the typical menopause symptoms like hot flashes and night sweats (though he wasn’t wrong I got those too lol) This is the same gyno doing my surgery too, so I need to trust in his judgement but damn it I am freaked out that I didn’t find this all out before ever getting that leuprolide prescription filled and put in me. I would’ve refused it. Now what? I am praying I am maybe just being hypochondriac ?? and this isn’t as bad as it all looks now I’ve written it ALL down 😱
Kristine says
I feel like I got off easy – reading the horror stories using this drug. I was a high dose short-term use. On the whole the process was successful, and I only experienced hot flashed that went away after the treatment ended. It is not until later that I realized I have lost several years of my memory – gone. Faces, places, some people talk to me like they know me and I struggle to know who they are or how I know them. I have been able to piece some of it back together, but I have resigned myself to knowing most of it is gone and I have to try and replace somehow. Looking back I still think this is an acceptable risk for me given what I was dealing with. But I wish I knew before I started the treatment.
Thank you for sharing your information. I hope my story helps someone.
Louise Larsen says
I had my life ruined, utterly shattered physically by Lupron. Lynn knows the beginning of my journey.
I still live with permanent bone/nerve/joint damage from Lupron.
I tried to sue, but no lawyer has the courage to take these cases even though they KNOW there’s something wrong with the medication. But big Pharma is THAT intimidating.
Here’s the thing. There’s a full circle of hideousness in my life happening as my eldest child, a daughter, now has decided they are a trans male.
They won’t tell me much about the med they are given for transsexual change, but it kills me on a level I cannot begin to articulate as my kids childhood revolved around the severe pain and trouble all caused by the poison Lupron. Now they are actively seeking synthetic hormone changing drugs for reasons that truly bewilder me and have left me speechless and heartbroken.
My feeling is that the pharmaceutical mafia infiltrated social media and has preyed on female’s with body image dysmorphia and have found a new avenue to push their poison into a new, vulnerable demographic.
I’m so bewildered and gutted by all of this.
A mother’s pain and disability was not enough to convince a younger generation of the hideous damage this kind of hormone changing med brings to young women.
The Big Pharma lobby has stolen my health and now my child.
Fuji says
I was given Lupron after going to emergency room because of severe indigestion. They found out I had endo and because I couldn’t eat, they injected me with 3 month shot. It’s been a month and half since my last injection, most of my side effects went away except for hot flashes and strange psychosis. I keep hearing music and some voices in my head being repeated over and over. i think they call it intrusive thoughts / sound. has anyone else had this other than me? It’s gotten a lot better since the first time I started hearing things .. but summer heat is wearing me out and exhaustion is triggering more voices .. I took clonazapam and it stopped working so now I’m going to see my doctor and ask about different medication. My doctor told me it’s almost out of my body and my other side effects such as frequent urinating, muscle twitching all went away .. and hot flashes became a lot milder too.. if anyone is reading this, it is a horrible drug but my side effects are decreasing as I didn’t get my next shot.. yet there is no pain for endo for me still. i think the drug is too strong and it’s still in my body and that’s why I still have side effects. So if you are suffering, please know that things do leave eventually. Just make sure you eat well and take vitamins and supplements to help you. but anyone else experienced hearing voices or music randomly .. please let me know. ps. I didn’t have any other side effects other than hot flashes (happened after my period stopped after second month of injection), little bit of joint pain on my fingers, muscle twitching (happened after hot flashes occurred), nervousness, anxiety, little bit of insomnia (some days I sleep well some days I don’t), little bit of tiredness not too much but it got worsens over the summer so it might not be the Lupron injection, little bit of nausea with hot flashes, awkwardness, being scared to be alone at home (I loved being at home alone but now I feel very strange about it), most annoying thing is hearing voices and music randomly. I can’t turn it off.. please plesee let me know if anyone else experienced this voices and music too.
Steve Haines says
I am a 63 year old male. I reluctantly agreed to a Lupron injection in June 2022; worst decision ever. After having prostate surgery in April of 2022 and having the prostate totally removed and assured I was cancer free…Lie number one , I was in fact not cancer free, it had spread to my lymph node. The devastation from the onset of cancer to finding out it has spread was debilitating enough. Lie number Two…You need this Lupron Injection before starting radiation NO NO NO do not agree to this without a second or third opinion !
Lupron has totally wrecked my life, the cancer wrecked my marriage but the effects of Lupron are just crippling. I am suicidal, tried three times but I was drinking so passed out ; next time if there is one I know I can do that deed no alcohol required…Lupron has pushed me that far. Emotionally Im a wreck, cry for no apparent reason. One minute happy next mad, depressed, anxiety attacks, hot flashes, night sweats, unsure of my goals to name a few symptoms. Sex well forget that my genitals are basically that of a child WTH ! I now have a therapist who i am pretty sure thinks i have totally lost it…not quiet but since I have new hobbies such as cutting on myself, tattoos to cover up insecurities (Ten in one day) Do some research before taking a Six Month Shot of Lupron or any Lupron for that matter !!!
Latasha says
In June 2011, I was given the first of 6 monthly lupron injections for suspected endometriosis . I called the drs office within minutes of leaving and told the nurse that my body felt strange and she told me that it was too soon and that I was fine but I insisted that I felt ‘funny’.
By the second injection I was already experiencing all menopausal symptoms including bone and joint pain and I didn’t have my period. The 3rd-6th injections, I was bleeding profusely all while experiencing menopausal symptoms added with severe weight loss,heat intolerance, sweating,blurred vision, palpitations, brittle hair, sever mood swings, hot flashes, night sweats, bone and joint pain and the list goes on.
I told my gynecologist that I would not be continuing to take Lupron but he didn’t listen and tried to encourage me to take 6 more shots. I refused and changed my gynecologist . My primary physician sent me for and eye scan only to find that my eyes had started to bulge. Soon after, it was found that I was near thyroid storm. I was started on all sorts of meds to control my thyroid and I eventually ended up being diagnosed (finally) with endometriosis and unfortunately, Graves’ disease and TED (thyroid eye disease). My eyes were so far out of my head that I had to have orbital decompression twice. I’m now down to a slither of bone that can be removed…but I’m saving that in the event my eyes start to bulge again.
I contacted the FDA who did respond, telling me that Lupron had never been tested on anyone with the Graves’ disease gene. I only found that out after my endocrinologist tested for it since no one in my immediate family has ever had thyroid issues.
I battled graves and hyperthyroidism for 5 years and had 4 surgeries on my eyes before being diagnosed as euthyroid. And after going through all of that, I am scheduled to have my 4th excision of endometriosis next month…yes, I still suffer tremendously from endometriosis and because of what I went through as a result of being giving Lupron injections, I refuse to take any hormones/medications that may assist with the pain. I’m terrified to take anything. I don’t think I would survive it. I refuse to take anything that stimulates my immune system because when I have, I end up having to take steroids to suppress my immune system.
Lupron has totally destroyed my life and 12 years later, I’m still battling the very disease I was prescribed Lupron. This horrible drug needs to be banned.
Christina says
Ok everything make sense now!!
stage 4 cancer, chemo radiation and Lupron treatment. Im suffering with insane itching on my arms, server leg and feet pain, No one can help me!
I’m never taking another shot. i also haven’t slept in days!!!!
Sue says
Have been suffering in silence for several years. Was presented with the option to take Lupron in 2018 by my OBGYN to help with severe symptoms of peri-menopause. Could not take antidepressant because I am a pilot and could not afford to lose my medical/license/job! I began Lupron injections and hormone therapy. First year was fine and I did feel better. Second year I wasn’t feeling well and mentioned to my doctor that I felt like I had an electric current radiating through me, and asked if this could be due to the Lupron. She assured me that my symptoms were not caused by Lupron. Another six months went by and I told my doctor I wanted off the drug. I started seeing a naturopathic doctor who was not surprised to hear what symptoms were plaguing me. I am left with severe pain in my feet and joints, exhaustion, anxiety and generalized pain in my body. I have been off Lupron for two years and have been suffering more and more from body pain. I had always been healthy! I was a runner, rode horses, ate well. I took care of myself, and I now have less mobility and energy than my 80 year old mom. I’m 54 years old now and struggling in a way that I have been afraid to admit. Thank you to all of you who have shared. I empathize with you and know that you are not alone. I understand how alone you must feel…
Kelli says
I am so glad I found this page…. My story and I will try to make it short: In 1993 I had had 2 surgeries for Endometriosis, my doctor decided to have me try Lupron injections for 5 months. Had all the normal (not fun) side effects, and at the end of it all it did nothing but cause some infertility issues a few years later. Bounce ahead several years…. I have had so many hormonal problems, ended up with a hysterectomy in 2005, gastropareses dx in 2018 and now I am being tested for Cushings Disease. There has been all sorts of other “stuff” that has happened thru the years, but this latest, I decided to do some of my own research and am now wondering if all the things I have had to deal with thru the years are related to having been on Lupron. I eat a very healthy diet and exercise (have medical /surgical induced hypothyroidism)…been putting on weight with no explanation. My endocrinologist has seen my food diary and said she is starting to wonder if Cushings is now the cause. I am wondering if its not cushings if my pituitary gland still has something wrong with it now due to the Lupron?
Haley says
I am nothing but grateful for Lupron. I am receiving treatment with this drug to TREAT the very symptoms you now struggle with. I came across this article because I have acne for the first time in years. A minor inconvenience after losing two weeks of my life every month to PMDD. I’d rather break my leg and lose my teeth than go back to that hellish carousel.
I’m sorry you had a bad experience. Ive been living with debilitating physiological symptoms due to ovarian hormone cycling for 20 years. I only ever felt normal while pregnant.
I would have taken my own life, and told my doctor as much, if I ovulated once more and needed to shut my life down to coddle my constant suicidal ideation and intense anxiety for another 2 weeks out of EVERY MONTH.
I recommend checking out the women whose lives are being saved by this medication to treat their PMDD symptoms until our total Hysterectomy/Oopherectomy. It’s the only cure we have right now. The only relief. 30% of us will attempt suicide. Many complete the attempt.
So, I don’t care if it wipes me out early. I was only living half of my life as it was. It was like dying and going to hell for two weeks every month, feeling relief once you start to menstrate because the symptoms abate immediately, then hoping like hell you can fix what those last two weeks robbed from you and that maybe your next ovulation/luteal phase will be easier on you. It never is.
Imagine bleeding and feeling okay for a week, knowing that once the bleeding stops you’re on borrowed time until your entire world comes crashing down and you can think of nothing but the sweet release of death while being unable to get out of bed on a 28 day cycle. Every month.
Good luck to you, I hope your symptoms improve. Please do not advocate for the medicine that’s saving my life to be removed from use.
Julie says
Hi.. I just came across this thread and wow! My daughter had central precocious puberty at age 7. She did Lupron injections for 3.5 years. Last march we stopped them and she was 92 lbs, however by December she dropped to 69 lbs and the change has been DRAMATIC to say the least. She does not have an “eating disorder” as she does eat. I have noticed that her appetite has changed, and she does spend way more time in the bathroom trying to have bowel movements. I think at this point we need to follow up with GI as all of her labs have come back “normal”. and the Dr. is at a loss for reasoning other than anorexia. I’m now wondering if all the weight gained during lupron has come off and if she’s experiencing GI issues. Reading through these stories..it seems this could be a very likely possibility. Thank you all for sharing.