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Remember, this is educational information only and not medical advice (and I am not a doctor nor an expert on endometriosis). Always check with your qualified medical professional before making any changes to your treatment plan.
Lupron and GnRh agonists
Lupron is a GnRh agonist. All GnRh agonists are very similar chemically, but they come in different forms:
- three-monthly injection
- monthly injection
- daily injection
- nasal spray
These are things like Lupron, Zoladex, Synarel, Prostrap, etc.
These put you into medical menopause by affecting the way your brain talks to your ovaries on the hypothalamus – pituitary – gonadal axis. The medications block the production of ovarian-stimulating hormones. However, endometriosis can continue making its own estrogen locally via the aromatase enzyme.
It doesn’t treat the disease
This GnRh drug is commonly prescribed by misinformed doctors as a treatment for endometriosis. However, it cannot diagnose, treat, remove, or shrink endometriosis lesions. Unfortunately, many doctors spread this misinformation because that’s how the disease has been marketed to them. What Lupon may do for some patients is provide symptom management only (although many patients find the drug side effects intolerable).
The FDA has only approved Lupron for 6 months without add-back treatment, and 12 months total if add-back is used the second six months. Add-back therapy is a medication you take at the same time at the same time as a GnRH agonist: a low-dose oestrogen, a low-dose progestin, or tibolone alone. If you decide to stay on Lupron for longer than the FDA recommended time limit, you should speak to your doctor about having a bone density scan to periodically check your bone density.
It can have serious side effects long after stopping the drug
Apart from the side effects one may have while taking the drug, it may also cause long-term, irreversible side effects even after stopping the drug. Many people report having permanent side effects from Lupron, some of which have lowered their quality of life or even left them disabled. In fact, there are Facebook groups called “Lupron Victims” and “Lupron Survivors” because these people’s health was so seriously affected by Lupron that they feel they survived taking it!
This isn’t to scare anyone, but rather to say that in terms of side effects, they can be serious, permanent, and even disabling. Unfortunately, many doctors are not discussing these with patients, oftentimes because they are not aware of them. Many people who take Lupron later say, “I wish I had known XYZ about Lupron before taking it.” For this reason, we did a five part series on Lupron and Orilissa (an oral GnRh drug that came out in 2018.) See my podcast episodes below.
If you decide that taking Lupron is right for you, then I hope it provides you symptom relief! However, make sure to adequately research Lupron to see if you feel that the potential benefits outweigh the potential risks of taking this serious medication.
Clinical data on Lupron was falsified, hidden, or exaggerated
Dr. David Redwine is a world-renowned endometriosis excision surgeon and has devoted his career to researching about endometriosis. Dr. Redwine had access to Luprons’ raw data when we was an expert medical witness in one of the lawsuits against Lupron in 2011.
Dr. Redwine, while looking at the thousands of pages of raw data, put together a 300 page report to the FDA called Lupreulide, the D is Silent. Lupreulide is the drug name of Lupron, and if you take out the D from Lueprolide it reads Lureulie, is in “lie” – a play on words due to his findings listed below:
- the published data on Lupron didn’t match the raw data – the published data hid important negative findings about Lupron, downplayed risks, and used deceptive, misleading charts to make the data look more favorable.
- Dr. Redwine’s conclusion was that the benefits did not outweigh the risks, and asked the FDA to remove Lupron from the market immediately.
We also know that:
- Andrew Friedman, who was a researcher who did clinical studies on Lupron, admitted to falsifying the data in two Lupron studies – one of which was for the effectiveness and safety of Lupron with add back therapy for endometrisois. He admitted this at court, on trial.
- Some of the Lupron trials that the endometriosis data is based on had very small sample sizes (like less than 50 patients).
- Due to all the published data not matching the raw data and painting Lupron in a much more favorable light, doctors haven’t been accurately informed of the real risks and therefore can’t accurately inform patients.
It’s not your only option
- GnRh drugs don’t do anything to the endometriosis itself like shrink it or dry it up.
- Endometriosis can still progress while you’re on GnRh drugs.
- Various studies comparing GnRh drugs to other hormonal medications show these all to provide similar symptom relief.
- GnRh drugs are meant to be second-line treatments, prescribed when first-line hormones like contraceptive pills, progestin shots, IUDs, etc are ineffective, not tolerated or contraindicated.
- GnRh drugs have a higher side effect profile than first-line treatments, and you can’t be on them as long.
- GnRh agonists can have serious, and even disabling, long-term side effects that continue in some patients long after they stop taking the medication.
- Clinical data on Lupron was routinely falsified, hidden, or exaggerated.
Is this the best option for me?
That’s something that only you can decide after doing ample research on Lupron. I put together a lot of detailed information in my podcast episodes below on the efficacy and risks of Lupron and Orilissa, so please check that out!
My goal with my advocacy is to try and give fellow patients information to help them make informed decisions, and I typically never give my opinion on treatment and management options because we are all individuals and need to do what’s best for us personally. I support any person who decides to take Lupron, but I will say that after all of my research into the falsified data, and the seriousness of the short-term and potential long-term side effects, I agree with Dr. Redwine that the benefits do not outweigh the risks. Especially because there are other symptom management options available. While there are some people who report that Lupron helped their pain and the side effects weren’t too bad for them, there are others who find the side effects intolerable or have lifelong side effects after just one shot of Lupron.
The only way to actually treat endometriosis is excision surgery and removing the disease at the root. However, not everyone can access excision surgery and we need a way to reduce our symptoms and improve our quality of life so we can do the things we want to do. Lupron only helps some people with lowering their endometriosis symptoms while they are taking the drug, and it’s considered a “band aid” because it’s only temporary – once the person stops the drug, their endometriosis symptoms typically come back quite quickly.
With any treatment or management option, we should assess if the benefits outweigh the risks. Some helpful questions we can ask ourselves are:
- What other options do I have? (Excision surgery, diet and lifestyle changes, other hormonal medications such as the IUD, progestins, and birth controls which have a lower side effect profile and provide similar pain relief to Lupron.)
- What options have I already tried?
- What risks are there to this medication vs the other options?
- Is my doctor an actual endometriosis specialist?
It can be hard to make choices about our endometriosis care. From the misinformed doctors, to the difficulty of accessing a true specialist, to the daily symptoms which make everything 10 times harder, it can be difficult to gather all the facts to make a fully informed decision. We should be given all the facts and options from the start when we go to the doctor for endometriosis care, but unfortunately that typically doesn’t happen and a heavy burden falls on our shoulders to educate and advocate for ourselves. Which is unfair and exhausting.
Sometimes we judge ourselves, or others judge us, for the choices we make about our care, but there shouldn’t be any judgement on our choices, especially from other people! Whatever choices you make for yourself are based on what you think is best at the time, and that’s all we can do for ourselves: gather information and make a decision based on it. We don’t know how we will respond to a certain treatment, and we are all making the best decisions that we can based on our personal risk/benefit analysis as individuals. Not to mention that sometimes we are stuck between two impossible choices.
For More Information
- Lupron Victim’s Hub – Eye-opening website run by Lynne Millican, “this website has been developed to serve consumers, healthcare workers, attorneys, academia, and law enforcement officials seeking information on the GnRHa ‘drug’ Lupron (leuprolide) and its associated health risks. Also explored will be the problems with lupron’s approval by the FDA, lupron’s history and ‘science’, the marginalization of lupron victims – and, in short … every pertinent thing I’ve learned or written or received regarding the ‘drug’ lupron/leuprolide and GnRHa’s since 1989.”
- They Say Lupron is Safe – Article by Lynne Millican on the website Hormones Matter. (You can use the search bar on this website to find more information on Lupron as well.)
- David Redwine, MD – Leuprolide: The ‘d’ is Silent – Talk given by endometriosis excision expert Dr. David Redwine on endometriosis and Lupron.
- Using Lupron to Diagnose Endometriosis: Fact or Medical Fiction – Written by the Center for Endometriosis Care on the Hormones Matter website.
- Lupron- What Does It Do To Women’s Health? – Good overview in this article on the National Women’s Health Network.
- Lupron Side Effects Survey Results Part One: Scope and Severity – Results from a large survey on on side effects of Lupron from over 1400 participants.
- Endometriosis: Lupron Resistance is Based in Fact – Article on Linkedin by Nancy Peterson (founder of Nancy’s Nook, retired nurse, and endometriosis advocate.)
- The Unmasking of Dr. Andrew Friedman – Excerpt from Trial By Fire – Andrew Friedman was a lead researcher for Lupron who admitted at court to falsifying 80% of the research in two Lupron studies. You can see a Federal Registrar of the misconduct finding here (link from Lupron Victim’s Hub, will open as a Word document.)
- Lawsuits on Lupron – List with links and reports from Lupron Victim’s Hub.
- Lupron product liability lawsuit reports – Definitely check out the GueriguianReport (from John Gueriguian, former FDA officer and retired professor of pharmacology) as well as the RedwineExpertReport (from Dr. David Redwine, now retired excision specialist with 30+ years of experience and expert medical witness during this trial.)
- 2 Drug Makers to Pay $875 Million to Settle Fraud Case – Article on how the makers of Lupron had to pay criminal and civil charges for illegally manipulating Medicare and Medicaid programs.
- The sneaky way pharmaceutical companies use celebs to market their drugs – The article gives an overview and specifically uses examples with endometriosis.
- Dollars for Docs – Here you can enter in your doctor’s name and see how much money they have received for certain drugs or medical devices.
- Hormonal Therapy in Women of Reproductive Age with Endometriosis: An Update. – 2019 research article by Gheorghisan-Galateanu AA, Gheorghiu ML. Acta Endocrinol (Buchar). 2019;15(2):276-281. doi:10.4183/aeb.2019.276
- Endometriosis and Medical Therapy: From Progestogens to Progesterone Resistance to GnRH Antagonists: A Review – 2021 research article by Donnez J, Dolmans MM. J Clin Med. 2021;10(5):1085. Published 2021 Mar 5. doi:10.3390/jcm10051085
- Zoladex: the Hidden Truth – Podcast episode by the Invisible Iconic.
Related Podcast Episodes
- Ep 30 – Orilissa and Lupron. Part 1 – Big Pharma’s Influence on Endo Information
- Ep 33 – Orilissa and Lupron. Part 2B – How Effective is Lupron?
- Ep 37 – Orilissa and Lupron. Part 3A – Side Effects
- Ep 39 – Orilissa and Lupron. Part 3B – The Potential Long Term Risks
- Ep 91 – What Can Hormonal Suppression Actually Do For Endometriosis?
- Ep 92 – Hormonal Medication Options for Endometriosis