Orilissa and Joint Pain: What Users Say

• Les...
• Taken for less than 1 month
• May 10, 2019

For Endometriosis "I didn't last a month on Orilissa medication for endometriosis. Most troublesome side effects included: 1.) disastrous, mobility-limiting joint pain in my knees, wrists, hands, and arms 2.) three migraines within less than a week -- if I were so lucky as to not have a migraine, I had a heck of a headache instead. 3.) awful back pain. 4.) mood disturbances. Orilissa is terrible, and the Ori For Me program stonewalls patients by providing inadequate answers to concerns. This medication doesn't treat or cure endometriosis and only serves as a potential short-term band-aid for pain management, so please consider the dramatic side effect profile carefully before trying it yourself. Endometriosis patients deserve better than this."

• Hea...
• Taken for less than 1 month
• September 24, 2020

For Endometriosis "I took this pill, Orilissa, for 3 days. The first day was not too bad. Started to shiver like I was cold, but it went away after 15 minutes, minor cramps in the abdomen area, with a lot of diarrhea, and feeling hot inside, which is not that bad. I’d rather deal with that than the pain I was dealing with on a day not being able to walk due to the pain. Day 2, I had some words I had trouble getting out, but like the shivers I got, it went away after about 15 minutes, so I did not think anything of it. I also had joint pain all over, and my hot flashes got worse. Day 3: Not able to talk right, my doctor's nurse instructed me to go to the ER due to me talking like the pig on Looney Tunes (IIII JJUST WWANTED HHHELP). That was a sample of how I sounded. I still had joint pain, shortness of breath, nauseous diarrhea, feeling extremely anxious, blood pressure was 164/96. This drug was not for me, I had high hopes, and now I just pray I can keep my job of 14 years."

• Cec...
• Taken for less than 1 month
• June 15, 2019

For Endometriosis "I have endometriosis and fibroids. My estrogen was way too high. I was a very emotional person, extreme PMS mood and pain. I had painful ovulation as well. The last two weeks of my cycle, I was a raging hormonal lunatic. I'm on my 4th week of Orilissa, and I'm a whole new person. I feel like I did when I was 21. My joints ache occasionally and sometimes have spotty memory, but my quality of life has done a 180. I've begun vitamin D supplementation in hopes of preventing bone loss because I love this drug and hope to continue it as long as necessary."

• Bee...
• Taken for 1 to 2 years
• March 5, 2021

For Endometriosis "I was diagnosed with endometriosis when I was 17 and had a laparoscopy the following year. I have been on almost every birth control or endo treatment, and this is the first med that I've been able to take that actually helped my symptoms drastically. I didn't experience most of the initial symptoms as I have been on a continual pill treatment for the last 10 years, so I haven't had a period or PMS symptoms for nearly a decade. I read many comments saying that they took it with a contraceptive or other hormonal pill, and that is a big no-no and the main reason why they had such horrible side effects and experiences. I did/do experience side effects, but I would rather have hot flashes, joint pain, trouble sleeping, and night sweats than live every hour of my waking life with unbearable cramps, bloating, back pain, and all of the other symptoms I had with my endometriosis. A lifesaver and a must-try treatment for any woman suffering with endo."

• Max...
• Taken for 6 months to 1 year
• May 26, 2021

For Endometriosis "Stay away! Unfortunately, due to doctors or the people that tell them what they can and cannot do, we ladies in excruciating pain aren’t allowed real pain meds for flares. Instead, we’re given experimental drugs that don’t work and only lead to more problems. This medication gave me such bad hip and joint pain that I could hardly stand, let alone walk. I was fresh out of 2 back-to-back surgeries and this pill only made my body trauma worse with ZERO pain relief. Endometriosis is real and painful as anything, and it’s about time it be taken seriously."

• Ell...
• July 3, 2021

For Endometriosis "I was on this medication for roughly 4 months due to painful cramps. When I first started taking it, I had headaches daily for 2 weeks and experienced hot flashes. By the third week, the side effects subsided and my cramps became nonexistent. I felt pretty positive about the medication for a while, until I started losing my hair by the handfuls and my joints became achy. This was not normal as a 24-year-old woman, so I talked with my doctor and stopped taking the medication. Now that it has been a week since I stopped taking it, my hair is still falling out and I have nausea every day. I did not have these issues until taking Orilissa and had normal blood work prior to taking this medication (ruling out most other possibilities). Orilissa did help cramping, but the intense side effects were not worth it to me."

• Ash...
• October 11, 2019

For Endometriosis "When I started Orilissa for endo, I was a little hesitant. I started to get severe bone pain, my doc put me on Fosamax, it helped. The first week my endo pain disappeared, then it started to show its ugly face. I started feeling depressed and very irritable from the med. I started having really dark, morbid thoughts. The way I was feeling physically and mentally was hard. One minute I would be fine, the next I would feel so far down it was unbearable. I stopped the med after six months due to having most of the common, uncommon, and rare side effects and the mental state that it put me in. It has been four days since I stopped, I’m feeling very irritable, emotional, and my joints are sore. This med didn’t work for me, I still had endo pain with the side effects. If I knew then what I know now, I wouldn't have started this med. There isn’t enough info about it out there. Please do your research on this med before you possibly make the same mistake. If you are currently on it and are having issues, please tell someone! This med is not worth it. Good luck!"

• LJa...
• Taken for 1 to 6 months
• June 25, 2019

For Endometriosis "This week is my 12th week on Orilissa. I have endometriosis and PCOS and am also using Mirena, so I do not have a period but still have the symptoms. I have not had good results with this medicine. I had severe headaches when I started taking it. They eventually went away, but I have had hot flashes the entire time. My joints ache, it has gotten worse as time progresses. My hands are swollen a lot from the ache. The mood changes, depression, and negative thoughts are present and difficult to deal with. The medicine has not helped me and only made the symptoms I already deal with from endo and PCOS worse. I stuck it out until the 12th week because my doctor said that is when most women feel the benefit, and the cost is so much cheaper than the BC I had been taking, so I really wanted this to work. I will not be continuing to take this medicine."

• End...
• January 28, 2020

For Endometriosis "I have stage 4 endometriosis, have had a colon resection due to endo, and been on the Lupron shot (which was the worst decision I have made). My doctor looked at my history and suggested Orilissa as my last option before surgery. I started on 200 mg twice a day. I could tell within weeks the change and being pain-free, but of course, it came with a price. The hot flashes are miserable, the joint pain wasn't too bad, the headaches didn't last long, the vision is still struggling, the dry skin was very bad, and bruising and blood spots under the skin are very bad. My doctor reduced me to 200 mg once a day, and within 3 weeks my pain was back and the cysts on my ovaries were back. I went back to twice a day. I figured I could handle hot flashes. I have been off of it for three days now, and the withdrawals are pretty bad. My hot flashes have turned into hot sweats and then freezing spells. My eyes are still very blurry and hard to focus, and I still have restless nights even with a prescription sleep aid."

• AMa...
• Taken for 6 months to 1 year
• October 7, 2019

For Endometriosis "I had laparoscopic endometriosis surgery in March 2019 and was prescribed Orilissa. The first few weeks after taking it, I did experience frequent headaches, mood changes, and night sweats. I figured it would work itself out. It has now been 6 months, and I have been told by my doctor that Orilissa is not working to slow down the growth of endometriosis, therefore, I am scheduled for a partial hysterectomy in November. The past few weeks have been very rough, battling side effects of this medicine such as daily headaches, joint pain, back pain, hip pain, pain in my abdomen, anxiety with heart palpitations, weight gain, restlessness, sleeplessness, night sweats, very sad and disturbing dreams, irritability, and no change in sex comfort. Sex drive has been nonexistent since March. While the benefits of this drug to slow down the progression of endometriosis may have once been beneficial to me, the side effects outweigh those benefits."

• Nat...
• Taken for 1 to 6 months
• September 20, 2019

For Endometriosis "The medication worked for pain control, but unfortunately, I only lasted taking the medication for 6 weeks. I got the hot flashes, which were not too bad, my issue was the severe change in my mental health. I was having increased anxiety, depression, and terrible dark thoughts. It got to a point where I did not trust myself to be alone. I also gained some weight and constantly felt bloated. No menstrual cycle for those 6 weeks, which was wonderful. I also did have trouble with finding words and concentrating, and also joint and back pain. It's a shame it caused me to mentally feel like I wanted nothing more than to die because it did help with pain greatly. I've read my side effects are not as common, but it's a scary feeling to not feel safe alone. I'm looking for the next option to try and help the pain."

• Upd...
• Taken for 2 to 5 years
• November 18, 2023

For Endometriosis "I've been on Orilissa for 4.5 years now, which is probably the longest anyone has taken it. Pros: my endometriosis pain is gone -- no periods, no pain, no bone loss. It's allowed me to pursue dreams that I didn't think were possible because I used to be bedridden. Cons: I'm stuck on this medication for life. I've tried going off several times, and my depression destroys me, and the endo pain comes back after about 3-4 months. The mood swings aren't as bad coming off as they are going back on. If I miss pills for more than 5 days, I start to notice horrible mood swings, cramps, and joint pain. I don't know. This medication has been a blessing and a curse. As long as I take it daily, everything seems to be okay. But it scares me that I'm hooked on a pharmaceutical drug, and we don't know the long-term effects of taking this for the rest of my life."

• Anonymous
• June 29, 2019

For Endometriosis "I have been taking Orilissa since the beginning of January following a second laparoscopy over Christmas. The beginning was super difficult. The headaches, nausea, and dizziness were horrible. Light bleeding in the beginning. I kept a diary of my symptoms, and my headaches lasted about three weeks. Next came the joint stiffness. I decided to try collagen supplements, and I have had mild to no joint pain since February. I accidentally missed one pill two weeks ago and have been bleeding every day for a week now. I don’t know if it was from that in conjunction with the amount of stress I’m under right now, but the pain I have with my period is right where it was before my surgery. I haven’t experienced severe hot flashes like I did with the Lupron injections, and my mood swings aren’t as bad on the Orilissa compared to the Lupron. I’m going to give it another month and see if I get another period. Overall, I’m pleased with this medicine. No pain for five months has been heaven."

• Bun...
• Taken for 6 months to 1 year
• November 13, 2020

For Endometriosis "I had a laparoscopy in July of 2019 for endometriosis. I was put on Junel Fe afterward for symptom management. It didn't work out and I was put on Orilissa in February of 2020. I have had minimal pain and have been able to get a job for the first time ever. Before this, I missed school every month because I couldn't stand up on the first and second days of my period and had to run to the bathroom every 15 minutes. I no longer have a period, just some occasional spotting. I do get occasional cramping, but nothing near what I got before. The main side effect I have is joint pain, but it is worth it, as I am now functional. I know it can cause osteoporosis, but I don't care because this is the first time since I was 12 that I have been able to keep a routine. I will deal with long-term side effects when they show themselves."

• Pat...
• September 27, 2019

For Endometriosis "About 3 days into taking Orilissa, I noticed my pain start to lessen significantly. It was nice for about 3 weeks, until I started getting the side effects, which are the reason I decided to stop taking it. First came the joint pain. As the days went on, the pain intensified, spreading from my wrists to my elbows and shoulders, then to my hips, knees, and ankles. It became such intense pain that I was having to take over-the-counter painkillers for breakfast, lunch, and dinner. Then came the hot flashes. They started out being short-lived and rather uncommon. Then they started to get longer and more frequent; I still have both side effects, this is my second day off the drug. I feel that although my abdominal pain is excruciating and often unbearable, experiencing pain in all other parts of my body accompanied by frequent bursts of unforgiving sweating and irritability is not a fair trade. I am hoping that these side effects wear off."

• ron...
• Taken for 6 months to 1 year
• May 23, 2021

For Endometriosis "I started with the 150 mg dose in November 2020. (Stage 2 endo). At first, it made me very nauseous for about a month. Then it started working, and I was more than elated. I lost my period altogether after a horrible cycle in March. Now, 6 months into it, I am starting to feel the effects of menopause: sore joints, weight gain, sleeplessness, night sweats, lack of interest in sex, anxiety, and depression. Going to make a psychiatrist appointment. Having no pain is still better... we'll see how the next 6 months go."

• Cat...
• Taken for 1 to 2 years
• April 4, 2020

For Endometriosis "I started on this medication in January 2019, just after a surgery for my endometriosis. I was 17 at the time and was desperate for any relief from my pain. For roughly the first year, I was on 150 mg once a day. My medication cost $30 for a three-month supply or $50 for a nine-month supply through CVS Caremark and my insurance. For the first four months, I was feeling great, but then the pain hit again. For roughly nine months after, I was still in pain every day, bleeding constantly and feeling the side effects of the medication (night sweats, hot flashes, headaches, dryness, acne, joint pain, etc.). I also have a previously diagnosed anxiety disorder and clinical depression that seem to be slowly getting worse. Now I've been taking 150 mg twice a day for roughly a month, and I've been feeling alright. I'm still having all of the symptoms with the occasional endo-ache."

• Anonymous
• Taken for 1 to 2 years
• July 20, 2021

For Endometriosis "Started this medication in July of 2020 for chronic endometriosis. After 3 weeks, I was placed on Lexapro as it caused horrific anxiety and emotional outbursts. My periods halted and yes, pain subsided. However, the anxiety continued, started showing early signs of menopause (hot flashes, night sweats, fatigue, mood swings). I stopped this medication 3 weeks ago after starting to have symptoms of body aches/joint pain. Also, if anyone touched me or tried to tickle me, I would hurt so bad it would make me want to cry. Just this week, I have been diagnosed with fibromyalgia and bone density loss. I am 36 years old. This should not be happening. I will be having a full hysterectomy soon, as I should have done a year ago."

• Ash...
• Taken for 1 to 2 years
• May 14, 2022

For Endometriosis "I have been using Orilissa for about 2 years now. It has worked tremendously at managing my endometriosis pain and has somewhat given me back a normal way of life. However, for the past 6 months, I have been noticing a difference. I have been experiencing joint pains and increased back and abdomen pain. I also had a suicide attempt a few months ago, and since then, I have been prescribed Zoloft. I would recommend it short-term. But I haven't been able to find an alternative long-term solution for endometriosis."

• abi...
• Taken for 1 to 2 years
• November 19, 2020

For Endometriosis "I started taking this medicine Orilissa from April 2019, not many side effects on me, only feeling joint pain. The most important thing I want to mention is that after keeping taking the medicine every day at the same time for 1.5 years, I got my period again."

• phi...
• Taken for less than 1 month
• April 4, 2023

"I have to say I agree with all the other reviews to not take this drug. I only took this drug for seven days, and it was enough to make me think I was going to die. I took Lupron before I was prescribed this medication before starting my second IVF cycle for my adenomyosis. Lupron was way better in regard to the side effects. I asked my doctor from Genesis Fertility which one was better, and he said they work the same way, boy, was he wrong. On the second day on this medication, I started spotting, hot flashes, night sweats, horrible dry patches on my face, joint pain, migraines, blurry eyes, insomnia, and terrible mood swings. These symptoms got worse with each passing day, especially the bleeding. By day 5, it was as if I was on my period again, I was no longer spotting. On the morning of day 7, I decided that if I continued to take this drug, it was going to kill me. I still wanted to tough it out and take the drug because I paid $1200, but ultimately I decided not to continue."

• mag...
• Taken for 1 to 6 months
• October 30, 2024

For Endometriosis "I feel like I got my life back! I'm 32, diagnosed with endometriosis at 27. Decided to try Orilissa because I dislike birth control and my pain became unbearable. Pros: helped my pain level go from about 8/10 to 3/10. Helped my bloating, fatigue, sex life, and got my energy back! I'm also less irritable, and I lost 1 lb a week for the first 12 weeks. Helped lower my pain within the first 12 hours of taking it. Cons: made my good days great, but bad days more noticeable. Side effects I got were mild hot flashes, few headaches around the time I get my period, mild nausea, low libido, and joint pain. Started on 400 mg twice a day, changed to 150 mg/day due to joint pain. 150 mg not enough, 400 mg too much. Played with the dose, I now take a 150 mg tab and a half of a 200 mg tab, so taking 250 mg/day seems to be enough to control my pain and not get bad side effects. Been taking almost 4 months, and my periods are a lot lighter or I don't get one. Wish I could stay on this forever, but unfortunately can't."

• Reb...
• Taken for 1 to 6 months
• December 20, 2022

For Endometriosis "I was on it in 2019 for approx. 3 months. I’m also on some really strong epilepsy meds; and this was one of 2 medicines approved by my neurologist and gynecologist for my endo. I had some severe joint pain; an increase in my migraines, and an inability to sleep. And while it did get rid of my period, the side effects were not worth staying on the drug."