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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. (Important: this page is about GnRh agonists. This is not the same as GnRh antagonists, like Orilissa, Myfembree, Ryeqo, etc.)

GnRh is a hormone in the body that’s released by the hypothalamus, in your brain. Normally, it is released in pulses, binds to receptors in the pituitary gland, and tells it to send LH and FSH to the ovaries, which is the signal to make estrogen.

GnRh agonists mimic the GnRh hormone in the body and binds directly to the GnRh receptor on the pituitary gland, therefore “tricking the gland” into thinking it’s been bonded with GnRh hormone. GnRh agonists, however, isn’t released in pulses and when they bind to the receptor, they over-stimulate it. LH and FSH then flood the body, which tell the ovaries to make the sex hormones, especially estrogen. That’s why estrogen surges during the first 1-2 weeks on GnRh agonists, and many people see a worsening of their symptoms during that estrogen spike.

After that, the level of the sex hormones, including estrogen, begins to fall (through the desensitization and down-regulation of the pituitary GnRh receptors) and continue to do so until they reach menopausal or near menopausal levels.

However, it’s important to know that endometriosis can continue making its own estrogen locally via the aromatase enzyme. 

GnRh agonists don’t treat the disease

GnRh drugs are commonly prescribed by misinformed doctors as a treatment for endometriosis. However, they cannot diagnose, treat, remove, or shrink endometriosis lesions. Unfortunately, many doctors spread this misinformation because that’s how the drug has been marketed or explained to them. What GnRh drugs 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 or another GnRh agonist 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.

Lupron can have serious side effects long after stopping the drug

Apart from the side effects one may have while taking Lupron, it may also cause long-term, irreversible side effects even after stopping the drug. Some 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 potentially 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.

Some clinical data on Lupron was found to be 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 Lupron’s raw data when he 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 some of his findings listed below:

  • published data on Lupron didn’t always 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 potential benefits did not outweigh the potential 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 always matching the raw data and painting Lupron in a much more favorable light, it seems that doctors haven’t been accurately informed of the real risks and therefore can’t accurately inform patients.

GnRh agonists are not your only option

For many gynecologists, who are not true endometriosis specialists and don’t often see patients with endometriosis in their practice, Lupron (and/or other GnRh drugs) are the only “tool” they have for patients with endometriosis. GnRh drugs are supposed to be second-line therapies, meaning that they are prescribed when first-line therapies (oral contraceptive pills and progestins) are ineffective, not tolerated or contraindicated. Some studies have shown that in about 2/3 of people with endometriosis, first-line therapies often provide symptom relief.
 
Yet some doctors put their patients on GnRh drugs right away, as soon as they suspect endometriosis, and for much longer than the FDA approved time frame. Additionally, various studies comparing GnRh drugs to other hormonal medications such as the Mirena, Dienogest, Depo Provera, combined birth control pills, and others, have shown these other hormones (which a patient can be on for longer and that have a much lower side effect profile) to provide similar symptom relief to patients as GnRh drugs.
 
This is another reason why GnRh drugs are second-line therapies, but unfortunately many gynecologists are giving them out as soon as they suspect endometriosis, without any conversation around the side effects, treatment time limitations, or equally viable options.

In summary

  • 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.

  • Some clinical data on Lupron was found to be falsified, hidden, or exaggerated.

  • Lupron isn’t your only option for symptom management – even if it was presented to you that way.

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! 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 actually knowledgeable in endometriosis?

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.

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