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. 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:
A psychologist emailed:
A 27 year old woman
This reported death is not identified within the FDA’s Lupron AERS reports:
This reported death is not identified within the FDA’s Lupron AERS reports either:
And just a selection of some of the other emails received:
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”.