Lupron: a Nightmare produced in Abbvie

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February 18, 2014 | 54 Comments

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  1. 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.

  2. 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!

  3. 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.

  4. 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/

  5. 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!

    • 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.

    • 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

    • 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.

      • 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.

        • 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!

    • 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?

      • 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.,

  6. 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.

  7. 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

  8. 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

    • 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

  9. 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.

  10. 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.

  11. 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.

  12. 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

  13. 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

  14. 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!

    • 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!!

    • 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!

    • 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!

  15. 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.

  16. 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.

    • 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.

  17. 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!!!!

  18. 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

  19. 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.

  20. 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.

  21. 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.

  22. 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.

  23. 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.

    • 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

  24. 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?

  25. Are there any Lupron victims residing in/near Tucson Arizona? Be nice to form a support group. I feel so isolated.

  26. 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.

    • 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.”

  27. 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.

  28. 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!

  29. 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.

  30. 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.

  31. 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.

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