From Lupron Victim to Victims’ Advocate

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Lynne Millican Lupron Victims Hub
After being prescribed Lupron for endometriosis and several IVF attempts during the years 1989 – 1992, I began to experience multiple symptoms and adverse health – virtually all of which were deemed by my physicians as “unrelated to Lupron”. But because there had been such an abrupt change in my health since taking Lupron, I strongly suspected Lupron was responsible, and so started scouring the medical, pharmaceutical, scientific, and government literature for any validating bits of information. Lupron (a.k.a. leuprolide, leuprorelin) is used on women, men, and children for A-Z indications.

Over the course of decades I visited nearly every university and medical library in Boston and had read countless studies and articles, accumulating a significant body of adverse information about Lupron’s effects and risks. Ultimately my health deteriorated further, and home-based internet searches replaced trips into libraries. All this information sat on shelves, doing no one any good, until finally in 2008 a friend created the basic website and the Lupron Victims Hub was born.

The Inception and Goals of Lupron Victims Hub

Lupron Victims Hub was founded in 2008 to serve as a central resource for information not otherwise readily found concerning the drug ‘Lupron’.  Lupron (a.k.a. leuprolide or leuprorelin) belongs to a class of drugs known as “GnRH analogs/agonists” or the “relins” – i.e., Lupron = leuprorelin;  Synarel = nafarelin;  Trelstar = triptorelin;  Zoladex = goserelin; buserelin; histrelin).  Because of personal exposure to the relin, and the large market share that this drug has enjoyed, the website’s focus has been upon Lupron. To a lesser extent, the website also includes risks of other relins, as well as general risks to the relins/GnRH analogs as a whole.

The website exists as a resource for information on the risks and adverse effects of Lupron for consumers, medical professionals, attorneys, academia, and the media.  All my research, information, support, and assistance has been provided pro bono. Contact from victims and families frequently centers on their search for doctors and lawyers to help them – but at present time there is no such ‘Post-Lupron doctor/lawyer referral list’.  Hopefully the future will contain ‘Post-Lupron clinics’, with ample physicians and various specialties devoted to the diagnosis and care of Lupron victims – but currently, although there is a real nationwide need for such clinics, the thought is but a wishful pipe dream.

Twenty five years ago I felt like a lone voice, no one knew anything about Lupron, and no doctors or lawyers entertained a thought of this drug’s lingering adverse events. Now there are thousands of Lupron victims clamoring for help, lawsuits are in the courts and in the pipeline, and several physicians have gone on record about Lupron’s dangers, Lupron’s hidden data, and the serious permanent adverse effects upon women’s bodies.  It would seem that a critical mass is being reached, more media coverage is occurring, and more and more doctors are in earnest trying to understand ‘what the hell happened’ to the health of their formerly vibrant patients.

It took me personally a dozen years of searching post-Lupron to find understanding, caring, and appropriate medical care – a totally unacceptable situation. When doctors and the FDA (see ‘Open Letter to FDA’ ) are uninformed of the drug’s data and risks, they are ill-equipped to understand or accurately assess Lupron’s effects.  The atrocious “doctor visit stories” women recount post-Lupron (including my own) are hair-raising and nothing short of nightmare scenarios. Compassionate, diligent, and proper attention and care of these patients is urgently needed, yet negligently absent.

What We’ve Learned about Lupron

Information pooled on ‘Lupron Victims Hub’ should clearly identify that ‘Houston (and elsewhere)  … “we have a problem”’.  As for goals, I hope that my website will facilitate long-overdue acknowledgement of this public health crisis, and that those entrusted with our health and safety will initiate an investigation into Lupron’s long term adverse effects, remove the drug from the market, and establish appropriate medico-legal advocacy for these Lupron victims.  And any order will do.

Participate in Research

Hormones Matter is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.

To take one of our other Real Women. Real Data. surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones Matter is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. For more information contact us at: info@hormonesmatter.com.

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3 Comments

  1. I was given 3 Lupron injections (1 per month) at age 20 in 1991 after diagnostic laparoscopy that concluded I had the very lowest stage of endometriosis. I was pressured by the GYN doc to take a six month series of Lupron injections that he described as “experimental” – and thus NOT covered by my parents’ insurance. He told me this was my only way to avoid a CERTAIN hysterectomy by age 25. So my parents (I was full time college student) scraped together the $989 cost for each injection. I had never had any problems with depression/anxiety up to this point. However, within a week after first injection I began to experience sudden cold sweats with hear palpatations and unexplainable fear, followed by tremendous feelings of guilt (without cause), sadness, hopelessness, and despair so extreme I cried all the time and found it almost impossible to get out of bed. The only thing that comes close to describing the pain was it felt like the crushing heaviness in my chest felt when someone close to you dies. Added to this, I experienced all the common effects of menopause. The doc gave me Premarin & said it would pass. At that point, I began to experience severe morning sickness (though not pregnant) in ADDITION to everything else. I now understand that Lupron blocks the estrogen receptors, so Premarin was useless. After barely making it through 3 months of the six month plan, I could no longer deal with the NIGHTMARE my life had become and quit getting the monthly shots. I was told within a few weeks the Lupron would be out of my system and things would return to normal. THEY DID NOT. I am 44 years old now and have suffered with severe depression/anxiety for 24 years. I’ve seen many docs over the years who have told me it was not possible for the Lupron to have caused this – that I must have had an unrelated chemical imbalance. Over the years I have been switched from one antidepressant to another, some helped a little…some made it far worse. Was given Xanax for anxiety. Although I’ve managed to struggle through -despite one nearly successful suicide attempt in 2012 – I have never felt emotionally right since Lupron. In March of this year I had to have a total hysterectomy. Without my ovaries, the EXACT SAME FEELINGS returned with a vengeance! The antidepressant could not begin to help. After finally ending up on highest dosage (.1mg) bio identical estradiol patches, I had about six good months where I actually almost felt like I did before the Lupron. Sadly, about a week ago they evidently stopped working and the original symptoms are back. The antidepressant (Wellbutrin) doesn’t seem to help – but might be even worse if I wasn’t taking it. Xanax calms me down, but it’s still there. Not sure if the Lupron from the past has anything to do with the HRT only working for 6 months. All I know is my GYN tells me it’s a Psych prob and to call my psychiatrist..then my pychiatrist says he doesn’t work with hormone treatment, that it’s a GYN prob and to call GYN doc. Meantime, I’m lucky to make it an hour or two without bursting into tears uncontrollably. I guess it may be time to just accept that this is my life now and look to God to help me deal with it.

  2. I received Lupron Depot in 1994.
    I have suffered with Rheumatoid Arthritis and Fibromyalgia
    If I only knew back then that I would have lifelong disabilities.
    I do hope someday there will be a class action lawsuit.

  3. Hormones Matter? Find out for yourself: for only 10K, you can blast your hypothalamus -an important part of you brain that connects the endocrine and nervous systems- into orbit and age 10 years in just 10 days with Synarel (Nafarelin). Experience the bewildering world of dementia as you get lost on trips, become unable to hold and integrate new information or formulate any short- or long-term plans; and enjoy living only in the moment, like an accomplished yogi master, “AAAAAUUUUUMMMMM”, excluding the ability to move like one … or at all. Why bother with details like how visitors take their coffee, when you can simply forget they’re even there and just walk away to smell the roses instead. Utilize your permanent excruciating abdominal and stomach cramps, accelerated heat rate, shortness of breath, nausea, motion sickness and other vertigo symptoms by exploring new hobbies, like record-knitting, something you always thought of undertaking in retirement today; and stop wanting an IVF baby, but become one yourself, unable to support or advocate for yourself. Watch years of your life gently float by and be amazed how little you care whilst your brain remains firmly secured in a chemical straightjacket. You can revel in the excitement of finally finding peer-reviewed data supporting at least some of your “claims”, of all places, within prostate cancer research, and you can bathe in sweet insult to injury expertly delivered by an army of expensive specialists, claiming they have no idea what you’re talking about, but you cannot scratch your head too hard, wondering “how could something like this even be possible?” as this may accelerate your acute and chronic hair loss, and you don’t want that.
    I take my hat off to Lynne Millican, who in spite of a long list of debilitating GnRH-a related side effects and increasingly declining health could see her way clear to sustain efforts to warn others of this trap for over 25 years, and appeal to any suitably qualified parties to pick up on the well-researched and supported body of information she provided. Discuss this matter with colleagues and experts in other fields, and publish, publish, publish, not forgetting media that are accessible by IVF consumers. Thank you for conducting a long overdue survey, turning persistent anecdotal evidence into hard data. Suitable participants who might provide baseline as well as outcome data sign up to take a GnRH-a daily in ample numbers and should be easily recruited, as many of them do research their drugs outside the clinic environment prior to taking them. Could we please have Synarel and the other -relins included?

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