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.
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 ‘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.
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.
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.
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: http://www.petition2congress.com/1902/investigation-lupron-side-effects-leuprolide-acetate/. 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.
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”.