What's your experience with Orgovyx (relugolix)?

I will be finishing my 6 months of Orgovyx in 8 days. Luckily I got a grant for it and my cost is zero. I was also on Erleada at the same time and was in a study for that and also had a zero cost, I stopped Erleada when I developed a full body rash they would not go away for a month.

Orgovyx-PSA went down from 40 to less than .01 very quickly I have hot flashes, gained some weight, lost a lot of muscle, just in the last few weeks started to have joint pain in my already bad knees, but the mental issues have been the worst. Hard to explain what was happening but emotionally I was all over the place, I am forgetting things, have to really concentrate on what I am doing. But it did its job before and after my surgery and hopefully I will recover quickly. In the end I am glad I chose Orgovyx over Lupron.

I still did construction work almost every day but there where some days that I had to take off

I was 72 when I stared the treatment’s. I took Orgovyx for 12 months and really didn’t start having the side effects until after I stopped. I recently posted what I an undergoing now.

Update. My balance issues have been getting worse so I underwent Vascular and nerve tests. Vascular test came back normal however nerve test showed that the nerves to my lower extremities are damaged. Three doctor stated that the damage was definately caused by the 45 radiation treatment underwent. To clarify, prior to any ration tests I had 12 targets inserted in my prostate to better guide the radiation. I am now using a cane and the nerve specialist indicated it will only get worse. There is NO cure for this and at no time did anyone inform me that the radiation tests could cause this. Of course the radiologist takes no responsibility. She informed me that even though targets were inserted in my prostate they cannot be held liable for any issues. Between the Orgovyx side effects, especially the weight gain, and the neuropathy, I question why the urologist recommended leaving the prostate in. Several friends with prostate cancer that had it removed and with a few radiation treatments are doing quite well. They did have issues for about six months but all cleared up and they are living normal healthy live. Lesson learned, get multiple options.

My issues with orgovyx is very similar to many. I took it for a period of 12 months along with 45 radiation treatments. It had no been two years and I still feel the effects. Still tired all the time, sweats at night and sometimes during the day. So far my T has risen from zero to 128 but it is slowing going down not up. Have developed advanced peripheral neuropathy which causes severe balance issues. Had nerve tests which indicated damage to the nerves below my back which according to two doctors, comes from the 45 radiation treatments. When I stated orgovyx there was approx 7 side effects but now over 40. Very disappointed that the orgovyx was prescribed so early after they received approval. Cute may be worse than the disease.

hopefully there is no metastases. we are same age. It is both good and bad. It is good that we didn't have this disease earlier. It is bad because we may have tolerated the treatment better if we were a bit younger!
Good Luck to you

Not yet. Waiting for scan approval. MD appointment in 2 weeks. Moving slowly

No Radiation recommended for you?

I am 89 with a Gleason of 5-5 and taking Orgovyx for three weeks. Have had hot flashes and no bowel problems. Feel just fine. Have request for PSMA pet scan. Applied for about two wks ago with Advantage plan. First scan was regular one and said bones and lym nodes were normal so hope for the best and prepare for the worst

I am currently 75 and was on it from March 2021 to March 2022. I really didn’t start feeling the effects until after I stopped taking it. One of the primary issues I found was the list of side effects when I started was minimal. No it seems like there are about 36 or so. I also had 45 radiation treatments and just found out that I have extensive peripheral neuropathy which was probably caused by the radiation. Neuropathy cause problems with the nerves and cause balance issues. I really wish I had the prostate removed in conjunction with a small amount of radiation.

Hello, golferdto,

Really sorry to hear you are not doing better! Just wondering: are you still on Orgovyx? If not, how long were you on it? If you are still on it, has that been continuous since March 2021? Are you an older person?curious because I am 72.5 yo and am doing four months of Orgovyx and 40 IGRT sessions with Halcyon equipment. Thanks! Best wishes for better days! 🙏🏼