There is NO cure for endometriosis, so keep that in mind when researching. If anything says it cures, stay away from it. There are treatment options for endometriosis for pain and other symptoms and Orilissa claims to be one of those. Orilissa is a new medication that has been approved by the FDA for treatment of endometriosis and is manufactured by AbbVie. There is a commercial that comes on TV all the time promoting Orilissa for endometriosis treatment so what is Orilissa?
Let’s start off with a simple Google search for “Orilissa”. Immediately, you will see that another name for Orilissa is Elaglox and it is said to treat three common endometriosis symptoms: painful periods, pelvic pain in between periods, and pain with sex.
Seems appealing right? Well, let’s do some digging.
If you go to Orilissa’s website, www.oriliassa.com, there are popups for Use and Important Safety Information. In the use section it says, “It is not known if Orilissa is safe and effective in children under 18 years old”. This means if teenagers think they have endometriosis or have been diagnosed, they shouldn’t try it as there have not been studies on this age group. Hopefully a doctor wouldn’t recommend otherwise.
Under Important Safety Information, you will find information drug companies have to have for every drug. Do doctors willingly and without being asked give out or go over this information with their patients? NO. In this section, you will find that Orilissa may cause bone loss that may not recover. Your doctor MAY (which doesn’t mean they will) order a bone density scan. You can also find possible effects on pregnancy.
Serious side effects include suicidal thoughts and abnormal liver tests. Common side effects are hot flashes, night sweats, headache, nausea, difficulty sleeping, absence of periods, anxiety, joint pain, depression, and mood changes.
*These are not all possible side effects*
Orilissa is an oral tablet. It is a GnRH receptor antagonist and has several inactive ingredients. GnRH receptor antagonists are also used for prostate cancer treatment and puberty blockers. They suppress hormone production. In women, this category of medication shuts down their ovaries, which puts women in medically induced menopause. This is said to decrease estrogen levels and cause women not to have periods while on this type of medication, which is one of the reasons why doctors and the drug company think it’s an ideal treatment as estrogen fuels endometriosis to grow.
Other GnRH receptor medications that are on the market for treatment of endometriosis include Lupron (Leuprorelin), Eligard, Zoladex (Goserelin). But do they really help?
I haven’t tried Orilissa as it wasn’t on the market before I had my hysterectomy, but I have tried Lupron for a total of three doses as an injection and wish I hadn’t. I know everyone’s experience is different. Two years after my last dose of Lupron, I was diagnosed with osteoporosis at 24 years old. I have bones of a 60 year old even though I took vitamin D. A doctor hasn’t come out and said it was caused by Lupron (Why would they?), but I’m certain Lupron is to blame. If I could do it over again, I wouldn’t try Lupron the first time let alone three times. Osteoporosis is something I will live with for the rest of my life and I will have to treat and manage and it wasn’t “worth” it as Lupron didn’t help my endometriosis pain. Based off of my experience, I recommend researching anything anyone puts in their body no matter what your doctor says. My doctor didn’t do bone density testing and didn’t go over the side effects with me when she suggested I try Lupron for my endometriosis symptoms. I was 19 years old when I tried it the first time. I trusted my doctor and was young and didn’t do my own research. I have since changed doctors and thankful the doctor I was seeing in 2015 agreed to give me a bone density test so I would know what was going on with my body.
Now, let’s talk about the research. This is a very important report: https://icer-review.org/announcements/elagolix-final-report/.
It’s important to note that any studies conducted couldn’t determine the long term effects (years) of Orilissa use so those side effects are unknown at this time until people take it, but should we take the risk? I think not, but that’s my personal opinion.
Rx List displays results from a study that was conducted on 1686 participants; 475 received Orilissa once daily, 477 received Orilissa twice daily, and 734 received a placebo. The study was conducted in two six month, randomized double-blind, placebo-controlled clinical trials. This isn’t a long time frame. Below, you will find a chart that shows the side effects participants experienced within their respective group.
As you can see, subjects who were administered Orilissa were more likely to experience hot flush or night sweats, headache, insomnia, mood swings, amenorrhea (missed period for more than three months), and/or depression than participants who were taking the placebo. Doctors who prescribe Orilissa to patients are trying to decrease their periods so amenorrhea is what they are looking for, but is this healthy?
Below, you will see the results from bone density scans that were performed in the different study groups.
Those given Orilissa were more likely to have a decrease in bone density, especially if taking it twice daily. Here is the link if you would like to access more information from this website: https://www.rxlist.com/orilissa-drug.htm#description
Remember, do your own research before trying any treatment for endometriosis or any illness for that matter.
What do you think about Orilissa? Leave a comment below!
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and upcoming book "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.