Orilissa

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Remember, this is educational information only and not medical advice – always check with your qualified medical professional before making any changes to your treatment plan for endometriosis or any other health problems.

Orilissa and GnRh antagonists

Some new medications have been introduced onto the market in the past few years:

  • 2018 – Orilissa by Abbvie: generic name elagolix
  • 2022 – MyFembree by Myovant/Pfizer: generic name relugolix
  • 2022 – Yselty by ObsEva: generic name linzagolix

It’s symptom management only

Orilissa is an oral GnRh antagonist that came out in 2018 by the same makers of Lupron. It lowers estrogen 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.
 
This GnRh drug is commonly prescribed by misinformed doctors as a treatment for endometriosis. However, they cannot diagnose, treat, remove, or shrink endometriosis lesions. What they may do is provide symptom management only (although many patients find the drug side effects intolerable). 

It can have serious side effects

Orilissa (and other GnRh antagonists) has a long list of  potential side effects, including suicidal thoughts or actions, bone mineral density loss, abnormal liver scans, hot flashes and night sweats, headache, nausea, difficulty sleeping, absence of periods, anxiety, joint pain, depression, and mood changes.
 
Orilissa has been approved by the FDA for the management of endometriosis symptoms for 6 months on the higher dose and 2 years on the lower dose. If you decide to stay on Orilissa 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. However, it’s important to know that since it only came out in 2018, we still don’t have information on potential long-term side effects.

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 Lupron) is the only “tool” they have for patients with endometriosis. GnRh drugs (like Orilissa and Lupron) 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.

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 supposed 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 antagonists are new and we don’t have data on potential long-term side effects.

Is this the best option for me?

That’s something that only you can decide after doing ample research on Orilissa. 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!

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. Orilissa 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 Orilissa.)

  • 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, or others judge us, for the choices we make about our care, but there shouldn’t be any judgement on our decision 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.

For More Info

Related Podcast Episodes