Lupron

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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. What it may do 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

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 disabled. Unfortunately, many doctors are not discussing these with patients, oftentimes because they are not aware of them. Often 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 the episodes below.

If you decide that taking Lupron is right for you, then we 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”.) In his report, he talked about what he discovered: 

  • 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 didn’t 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. He admitted to falsifying the data in two Lupron studies, one of which was for the effectiveness and safety of Lupron with the 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

For many gynecologists, who are not endometriosis specialists and don’t often see patients with endometriosis in their practice, this (and/or Orilissa) is 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. Studies have shown that in about 2/3 of people with endometriosis, first-line therapies 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.

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 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, and 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. Between 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 for the choices we made about our care in the past, but just know that whatever choices you made for your care was what you thought was best at the time.

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