Orilissa and Hot Flashes: What Users Say (Page 2)

• End...
• Taken for 1 to 6 months
• January 20, 2020

For Endometriosis "I started Orilissa (200 mg) and was on it for 4 months. It stopped my periods completely, and I had hot flashes, mild mood swings. I was still having pain with sex (but it was during and not after now). I had my laparoscopy a month ago, and finally was healed enough to try sex again, but it was still very painful. I think now that the pain during sex is due to Orilissa, since this specific pain I've only experienced while on Orilissa. Orilissa did take my endo pain away, though (since my periods stopped), but now that I'm post-surgery I'm going to stop taking it and see if it's the source of my problem."

• She...
• Taken for 1 to 2 years
• January 17, 2022

For Endometriosis "I’ve been on this drug for about a year and a half. When I first started taking it, the side effects were horrible. Skull-crushing headaches, night sweats, hot flashes, mood swings, increased depression/anxiety, grogginess/brain fog, and overall just feeling like a pile of hot garbage. And after being on this drug at 150mg, I’m here to report that all of those side effects are still strong and very present. One might think, “Well, if it takes your endo pain away, then it’s worth it, right?” No. The pain is still there, I still have terrible flare-ups, I have random breakthrough bleeding, it’s just been a horrible time. Having endo + having terrible side effects just makes you feel more depressed and hopeless. Recently, I began to have strong symptoms that were just like PMS symptoms. After an MRI, my doc determined that my body is producing enough hormones to overpower the Orilissa. Now, I’m stuck taking 200mg twice a day for the next 6 months. DO. NOT. TAKE. THIS. DRUG."

• Anonymous
• Taken for 1 to 6 months
• June 5, 2023

For Endometriosis "I have been on Orilissa for over 3 months now! I was super nervous at first after reading reviews about Orilissa, but nothing else was working and my symptoms just kept getting worse. Well, I am so happy that I tried this medication. Nothing else seemed to work for me. I tried anti-inflammatory diets, various birth controls, IUDs, and surgery. Highly recommend! It is important to take this every day at the same time. If I had to name side effects that I have noticed: a few (less than three) mild hot flashes and some belly bloating. But nothing compared to previous treatments. I hope this helps!"

• 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."

• Anonymous
• Taken for 1 to 6 months
• June 20, 2023

For Endometriosis "I have Stage 4 endo. It grows on my appendix and liver. I have had severe occurrences of A-FIB as well. At 28 years old, with no other medical conditions, I suspect I have a small bit on my heart. It took me 10 years to get diagnosed. After the ex-lap, I started Orilissa for 3 months. Yes, I got headaches, hot flashes, and night sweats, and my boobs shriveled up like raisins. I had peach fuzz on my face. However, I was pain-free for the first time in 3 years. But I ran out while my pharmacy took too long to dispense the medication (the VA). So, having been off it for 3 weeks, my period hasn't come back. I had a week and a half of low energy, and over the last 48 hours, I have felt like there is glass inside of me. I am in so much pain, more than I think I have ever had. My bloat is so intense. I was actually reading these reviews for an explanation because I'm in agony right now. Ibuprofen 600 mg with alternating Tylenol is not touching the pain."

• Tar...
• Taken for 1 to 2 years
• March 31, 2023

For Endometriosis "I took the 150 mg Orilissa for the full 2 years. The only side effects that I had were hot flashes and night sweats, which do not go away while you are on the meds. Up until the last 3 months that I was on Orilissa, I did not have any issues with pain, cysts, bleeding, etc. The last 3 months, I had two periods. One was like a normal period with extreme cramping, and the last was a cyst rupture with heavy bleeding for 4 days. If you are like myself, that struggles with cysts, pelvic pain, and bloating, I would highly suggest this medication. You do need to give it some time, and you do need to take it at the same time every day. I simply set an alarm on my phone for a time I knew I would be awake."

• Anonymous
• Taken for 1 to 6 months
• November 5, 2021

For Endometriosis "After reading reviews, I was hesitant to start Orilissa. However, my Ob/Gyn had a lot of patient success with it. I started taking 200 mg 2x daily one month after having laparoscopic surgery to remove some of my endometriosis (stage 4). I took it a total of 4 months. Pros: I had absolutely no endo pain or the usual bloated feeling. I also did not have a period or any period symptoms. I did not experience any headaches, depression, or suicidal thoughts. Cons: Major hot flashes and sweats ALL day, EVERY day (continued several weeks after stopping). My body ached, and muscles always felt tight. I had no sex drive. Due to being over the hot flashes, I could not wait to be done taking this medication. I did not sleep one full night during the entire time of taking it. I find managing endo pain and heavy periods is easier than dealing with intense hot flashes. This medication affects everyone differently, and you never know what you're gonna get unless you try it."

• Can...
• Taken for less than 1 month
• March 25, 2020

For Endometriosis "I wish this drug could have worked for me. However, I could not deal with the debilitating nausea that it gave me. It felt like my hyperemetic pregnancy all over again. I also felt very emotionally unstable. I could have coped with the hot flashes and mood swings if it wasn’t for the extreme nausea, which was exhausting and a deal breaker for me."

• Anonymous
• Taken for 1 to 6 months
• April 2, 2022

For Endometriosis "I have used/attempted Orilissa at the 150 mg two different times. First round discontinued using after 1-2 months and second time after 3 months. The drug resolved 95% of my pain secondary to my endo, but the side effects were almost more destructive than dealing with pain. Side effects included: hot flashes, headaches, inability to sleep, fatigue, lack of motivation, extreme mood changes, anger, anxiety, weight gain, noticeable change in vision, occasional joint pain, and after consuming alcohol (a glass or two of wine) would not feel well. If you can tolerate the side effects and need short-term relief, sure, give it a go. But after my second round, I have decided my quality of life has drastically declined AGAIN and is not worth it."

• 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."

• Mix...
• Taken for 1 to 2 years
• September 29, 2021

For Endometriosis "I started taking this medication about 18 months ago. Started with 150 mg a day but quickly went up to 200 mg. At first, I had constant headaches, bloating, cramping, feeling of fullness, unable to sleep, extreme depression and anxiety, hot flashes, mood swings, but after about 10 or 12 months, all except the occasional hot flash and severe anxiety disappeared (I have been prone to severe anxiety and panic attacks my entire life, but this is on another level). BUT I AM VIRTUALLY PAIN FREE (from Endo at least... narcotic pain meds never really touched my Endo pain). Bone loss can be a huge issue, but as I am literally only taking this until I can have a hysterectomy, which can also cause bone loss, my doctor agreed to keep me on it a bit longer. I did run out 2 days ago and am angry with everyone, starving, gained like 6 lbs, my face is breaking out, my migraines are back, and I feel like I am cramping."

• Lim...
• Taken for 6 months to 1 year
• October 12, 2021

For Endometriosis "I started Orilissa 7 months ago after having several lesions taken off the outside of my uterus, colon, and near my bladder several months before. Before that, I had been on hormonal birth control for a long time and had a horrible experience (horrid periods and very severe depression and anxiety). I sometimes wonder if the relief I have from this medication is actually from being off the hormonal birth control, or if this is the medication actually working. I haven't had a period since starting, and it's been amazing, both physically and mentally. I still have endometriosis pain on the side that was bothering me before, but I don't have hours of cramping like I did beforehand. The first couple months I would get night sweats and hot flashes, but haven't had any since. The only real symptom I get is within 10 minutes of taking the pill I get extremely nauseous, and it sometimes lasts until the next day."

• 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."

• Toc...
• May 11, 2021

For Endometriosis "When I began this medication, I got really bad cystic acne. I had never had acne like this before, so I had to see a dermatologist to prescribe medication. I was on Orilissa at the lowest dose for 7 months and had night sweats that made it hard to sleep and hot flashes throughout the day. I noticed less pain, and my periods completely stopped and resumed one month after stopping it. I also suffer from anxiety and depression, and it became a little worse. I gained about 10 pounds, and I had blood work done right after I finished it, and I have a vitamin D deficiency. I don't know if it could be from this medication."

• Jme...
• Taken for less than 1 month
• March 16, 2022

For Endometriosis "Orilissa is absolutely the worst. The reviews are true. I was only on it for 3-4 days, and I had hot flashes and didn’t feel like myself. I switched back to birth control and now am experiencing cramps (due to the lapse in BC) and still do not feel like myself mentally. I feel down for no reason. I have been on birth control for close to 20 years, and it has some super mild side effects. I would take these any day of the week over Orilissa. I really feel like a lawsuit will be coming any day, honestly. It’s super strange that they had a nurse call me repeatedly. I feel that they know the mental health side effects and don’t care."

• bmf...
• Taken for 6 months to 1 year
• March 26, 2022

For Endometriosis "I have been on Orilissa for almost a year. I went on the 200 mg dose originally, and it helped a lot with symptoms of endometriosis, but I was getting hot flashes and night sweats, and it has caused my mood to change a lot. I switched to the lower dose after about 3 months and have been on it since, but I feel like it is slowly becoming less effective. I don’t get hot flashes as often on the lower dose, but I almost feel as though my emotions are dampened or very extreme, so beware of this if you have a history of depression/anxiety. I love the company, though they had a nurse who checked in on me to make sure I was doing okay and was able to get my prescription filled, and their program to pay for it is great if your insurance doesn’t cover."

• Ale...
• Taken for 1 to 6 months
• December 15, 2021

For Endometriosis "I started out with the 150 mg tablets, but they didn't work, so my Gyno upped the dose to 200 mg a day. At first, I didn't really think I experienced any help, but by the 2nd to 3rd month, I felt a difference and my menstrual cycle stopped completely. I did experience some pretty nasty hot flashes and night sweats, but that was the most, I thought, had occurred. I was told by my Gyno that the loss of my cycle was normal and so were the other side effects, so I figured they knew what they were talking about with the drug. Until she told me about the bone loss side effects on my follow-up appointment by month 5 to see how the medication was working, and then she dropped the bomb on me. She told me that I can only be on this medication for 6 months only because it is NOT FDA approved for longer than 6 months. I did experience bone loss in my teeth, and I found this out just recently after having a tooth extraction and my dentist showed me. BE CAREFUL with the drug!! THEY DON'T KNOW ENOUGH ABOUT IT!"

• Tat...
• Taken for less than 1 month
• January 31, 2022

For Endometriosis "I started Orilissa on Jan 1, 2022, and have almost completed a whole month. My OBGYN insisted that it wouldn’t work for pain until about 60 days — average. Week 1 of taking the medication, I was not in pain. Week 2 was menstrual week, and the regular pain that I had been having reduced to occasional cramps. I did, however, stop having hot flashes when I started taking this medication. My symptoms from endo, such as cystic acne, hot flashes, and more, have gone away almost entirely, but I have experienced vaginal dryness, which is a little uncomfortable during sex."

• END...
• Taken for 1 to 6 months
• January 23, 2022

For Endometriosis "I've been on Orilissa for almost 4 months. Reading the reviews, I was a bit terrified, I had tried everything else short of surgery. I had one period after taking it for less than a week, and it was painful, but I haven't had one since then. It has taken almost all my abdominal pain away, including my bowel troubles and most of my urinary pain. It's so much more bearable. I have hot flashes here and there and have experienced lots of headaches. My doctor prescribed a very low dose of estrogen to help counteract the headaches, hopefully. And says it shouldn't be enough to cause pain in my abdomen to increase. I would say that I'm more irritable than normal, but I'll deal with it for now."

• Eyn...
• Taken for 1 to 6 months
• October 27, 2020

For Endometriosis "I've only been taking Orilissa for a little over a month. I haven't noticed any side effects other than mild hot flashes and weight gain, but I also haven't noticed any difference in my pain. The only difference is that my nausea is a bit better than before. I still get it consistently, but not as bad. My doctor prescribed this to help with inflammation before my surgery. I was supposed to get Lupron, but it's constantly on backorder. Also, my insurance said they wouldn't cover it, but somehow my pharmacist got authorization, so make sure to check if your pharmacy has tried to get authorization."

• its...
• Taken for 1 to 6 months
• September 1, 2022

For Endometriosis "I started Orilissa a couple of months ago. It stopped my bleeding immediately, and it was good for a decent minute. I had some hot flashes here and there, but not too bad. After a month and a half or so, I started having frequent hot flashes, many times a day. I’d wake up sweating so badly. I felt like I was in an oven every time. I have been off of Orilissa for a week now, and I am seeing some improvement in the flashes, but wish it’d go away faster."

• 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."

• dap...
• Taken for 1 to 6 months
• August 25, 2022

For Endometriosis "I really enjoyed the benefits of Orilissa the first few weeks. I immediately stopped bleeding and felt great about it. A few weeks in, I started to have horrible hot flashes, many times a day, and they’ve only increased in frequency. I also have a mood disorder and anxiety, which have been greatly affected by Orilissa in the past couple of weeks (I’ve been on it 2 months). I cannot stand the way I feel, and I will be discontinuing the medication as soon as I speak with my OBGYN."

• Anonymous
• Taken for 1 to 6 months
• December 28, 2021

For Endometriosis "Amazing drug completely stopped my periods and pain! All I have sometimes are heat flashes."