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What's your experience with Orgovyx (relugolix)?
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?
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Does Medicare part D cover Orgovyx ?
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.
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.
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2 ReactionsI started ORGOVYX on April 1st. I am paying $520/Month copay. Not bad compared to $3,000/month with no insurance coverage!
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1 ReactionWeb265, I’ve been on Orgovyx going on 3 months now. Regarding restless leg, I experienced this prior to ADT. I discovered (by way of a cousin of mine) that aspirin helps. I take one Bayer aspirin, 320 mg, at night when I feel it coming on, but this doesn’t happen every day. I suffer from RLS once or twice a week. Oddly, the single aspirin appears to work for me and my wife. Have not done any research on this. As to hot flashes, I’m learning to live with them. I also take my pill in the mornings at about 9.
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1 ReactionI started Orgovyx on April 1st and my last SBRT treatment(fifth) was on April 18th. My RO asked me to come back after 3 months with my PSA and Testosterone results. It so happened that I had a blood draw on April 30th for a blood test ordered through Function Health and I just got the results today.
My total PSA: 2.1 ng/mL
PSA Free: 0.9 ng/mL (43%)
Testosterone total: 8 ng/dL
My PSA was 13.0 before the treatment. Orgovyx website says, PSA drops by 83% in 29 days for most people. That is exactly what happened in my case!
My testosterone before treatment was around 325. It is low but may be ok for my age!
I am surprised how much it dropped!
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2 ReactionsThank you for that helpful post. I started Orgovyx on April 22 and I have bloodwork scheduled for May 21. I’m just shy of 69 years old and my testosterone was 266. I expect that number to be below 50 by my blood draw. My last PSA after RT was 0.44 so I’m hoping that that will be down to 0.07 before I start RT. Good luck on your journey.
10+ yrs post rp
Psa rise at 7 yrs
Psma showed 3 pelvic nodes psa 3.6
Treated with 5 SBRT
Psa .6 began to rise 2 years later
Psma showed previous nodes resolved
But one new perimeter node. Psa .85
Started Orgovyx 7 weeks ago
Psa .1 testosterone. Down fron 435 to 6
Some fatigue at first and blood sugar issues and achy back.
Added xtandi
All through ucla
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2 Reactionsmammoth3414:
I am sorry that you have to go through with all this. So SBRT doesn't kill the cancer in all the lymph nodes? Who is your Radiation Oncologist? Mine is Amar Kishan.
wish you the best.
I am gaining weight slowly. I need to exercise more(aerobic and resistance training) and adjust my eating! My fasting blood glucose levels and A1c are also going up slightly, but my triglycerides are still low at 59.
Any of you are dealing with these or other side effects from Orgovyx?