What's your experience with Orgovyx (relugolix)?

Posted by web265 @web265, Jun 7, 2022

Mods, if you think this redundant, please move or remove. I thought it might be helpful to have an orgovyx thread similar to the lupron thread...

Hello all, I've been reading a lot on this board, posting a little, since my discovery about a year ago.

PSA 11 at discovery 13 just prior to RP, Gleason 4/3, 8 of 12 cores, RP in Sept of 2001.
Margins clean, right pelvic lymph removed & tested clean, minimal invasion in blood vessels and nerve tissue.
PSA 3 mos later <.2
PSA 3 mos later 0.039
PSA 3 mos later 0.091 off to the radiation oncologist.

PSMA PET CT showed nothing.

Orgovyx prescribed and just had my markers inserted and starting radiation in about a week (40 sessions)
My Orgovyx experience so far...about 10 days in...
No particular weakness or fatigue so far, but, hot flashes and "restless leg" at night which is really hurting my ability to sleep.
I work out four days a week and run 2 miles a day after workout. I haven't noticed any weakness yet, seem pretty much the same.

Has anyone discovered any supplements or come across any research as to the restless leg issues and hot flashes? or more to the point, any way to minimize/mitigate? I'll of course talk to the docs on this but I'm looking for something natural, I'd prefer not to get into the "swallow the spider to catch the fly" medicinally.

I've also been taking it at 9am(ish), anyone notice any difference taking it at different times of the day?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

firespooks | @firespooks | Apr 24 7:43am

Does Medicare part D cover Orgovyx ?

toolbelt | @toolbelt | Apr 24 8:14am

In reply to @firespooks "Does Medicare part D cover Orgovyx ?" + (show)

Generally, yes. Your cost will vary dependent on your specific Part D carrier. You should be able to go to your carrier's web portal and find a "determine the cost of a drug" or similar button.

ajpernsteiner | @ajpernsteiner | Apr 24 12:10pm

I went on Orgovyx September 1, 2022. Then i had 45 radiation treatments. I did have some hot flashes, not long lasting, several per day. During radiation I took an afternoon nap, but did keep up my yeard work (9 homes) going to the gym 3 times a week, rowing and walking. Did notice fatigue and some muscle loss. I did not gain weight, as I am very busy. The biggest complaint was weakness in the knees and some pain. I had pain in my hands, but used copper infused gloves which helped. My first psa after stopping radiation was 0.04. I took orgovyx for 18 months, just stopped 1 month ago. I had a testosterone test that just came back at 505....it is rising fast. My first post psa at 1 month off orgovyx is .1. Hope that doesn't raise fast!! I did not lose my libido through the process, but it did lessen, that has gone back to more normal. Night time erections are back as well. I do/did follow a strict diet. I don't drink any alcohol (never did more than maybe 1 beer a week) I avoid red meat, I eat salad, we don't do processed foods, especially meats. I supplement with high quality protein and collagen, especially so during radiation. I do drink lots of milk, which I always have. We do not eat outside the home often, my wife is a good cook, and she is in charge of the diet. I would have to say my experience with orgovyx was more positive than I thought it might be, and so was the radiation.