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!
Having medications to treat several different illnesses can be daunting, which is why I think having them organized in an area of your home to remind you to take them is extremely beneficial.
I take prescriptions, compounds, and supplements every day trying to feel my best. Want to take a guess at how many?
I take up to 20 on any given day depending on what’s going on.
I’m currently on prescriptions for the kidney stone procedure I just had done on the 22nd (Flomax, ciprofloxacin, Pyridium, and hydrocodone). I have 4 compounds I use every day (magnesium capsule, dhea capsule, progesterone cream, and biest cream), 1 compound as needed (phenergan), supplements I try to use every day (optiflora probiotic, vitamin d, osteomatrix, gla complex, adrenal rebuilder, adrenal c formula, l-glutamine, l-theanine), supplements I use when needed (vitamin e, cal mag, fish oil, stomach soothing complex). Below, I have what I use each medication for.
This is how I have my medications organized in case you find it helpful. The two clear trays have morning and night medications separated. I have my supplements in the middle black tray.
I’m 28 years old and often feel trapped in a 60+ year old's body because of chronic illnesses. I have to plan every day around medications to make sure my body is getting what it needs to function. This. Is. A. Lot. Some days maintaining my schedule for medications is overwhelming, aggravating, and time consuming, but I’m thankful to be able to take them. If you feel this way, you are not alone!
I try to avoid prescription medications because of the harsh side effects, but when I'm in pain, I don't have much choice. I’m slowly transitioning into a more natural approach of treatment for endometriosis, hormone imbalance, vitamin d deficiency, osteoporosis, polycystic ovary syndrome (insulin resistance despite having a complete hysterectomy), and irritable bowel syndrome.
Do you take medications and/or supplements every day? Is it overwhelming for you? Does staying organized help decrease how overwhelmed you are? Leave a comment below!
With the new year (or even year round), finances are a huge burden for those who have chronic illnesses that need to be treated with and without insurance. If you have insurance, you have to meet a deductible for plans to start covering health care costs on top of paying the monthly premium to have the plan. If you don’t have insurance, you have to pay for all of your health care costs out of your own pocket.
Let’s be real for a minute. Those who have chronic illnesses may have a harder time finding a job they can physically do because of their health. This puts a financial strain on their lives. They may not be able to work full time thus not qualify for health insurance or afford health care costs. If your job doesn’t offer health insurance, you may not qualify for federal assistance if your income isn’t high enough.
Why is our health care system this way? Every single person DESERVES basic health care. If you’re in pain, you should be able to have tests done to determine why you’re in pain and receive the necessary treatment. If you have diabetes, you should be able to receive your insulin. If you have asthma, you should be able to receive your inhalers. These are all life saving measures that should be provided to each of us in a timely manner.
About three weeks ago, I woke up to use the bathroom and all of a sudden had excruciating pain that I’ve never experienced before. I took a Percocet I had from a previous surgery and a bath, but no relief. I asked my parents to call for an ambulance because I was experiencing so much back pain on my right side and didn’t know what was going on. I don’t have ovaries, a uterus, an appendix, or a gallbladder so there wasn’t much it could be. As soon as the EMTs saw me, they said it was a kidney stone. I thought oh great . . . .
Once I got to the emergency room, I had to wait in the waiting room even though I was brought in by ambulance. I waited about 20-30 minutes before I was wheeled back to a room. After about three hours, I had a CT scan done and was given Toradol for pain and Zofran for nausea. I was told I had a 3mm kidney stone that I should be able to pass on my own. I was told I didn’t have an infection.
About two weeks later, I received the bill in the mail just for the emergency room costs. I don’t have insurance because I can’t pay $300+ a month for premiums for myself. The CT scan was $6,642. Are you kidding me? Am I making a payment on this machine for the hospital?! The total of this bill was $10,710.32, but I was kindly given a discount of $6,426.19. I’m responsible for paying $4,284.19.
I haven’t passed the kidney stone and I had to go to the er a week later because I was having trouble urinating and ended up having an infection.
This is why people don’t seek the health care they need. This is ridiculous. Am I saying all health care should be free (tests, appointments, prescriptions, etc.)? No. What I’m saying is we shouldn’t have to pay astronomical amounts of money to try to receive the health care we need.
How am I going to pay $4,000 for this one bill? Why is our health care system so broken? What can be done to fix it? Do you have an experience similar to this? 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 "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.