Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
@azdavew
My oncologist prescribed a depo-provera Shot every three months and it stopped my hot flashes until I started on Zytiga..
I took those shots for four years and they really helped.
About five years ago, I started testing the Embrlabs.com Wave2 device. It uses technology invented by MIT and it looks like a watch you put on the inside of your wrist. It works really well at night and stopped my hot flashes completely at night. During the day it helps it doesn’t always stop them, but if you can hit it soon enough, it does Reduce the intensity. You can buy one. It comes with a 60 day money back guarantee. If you do get one, let me know, and I will send you instructions for how to ideally configure it.
There is a list of drugs that may work posted in a meeting by one of the Mayo Clinic doctors.’
-
Like -
Helpful -
Hug
2 ReactionsWhen I was on Lupron & Abiraterone (2021-12 to 2024-03), I had a couple hot flashes a week, & found them amusing.
After a medication "holiday", I went back on Orgovyx & Nubeqa in March, 2026. About ten hot flashes a day, & they are no longer amusing.
At an office visit with my oncologist on Aug. 26, he noticed that my pulse was 42 bpm (it's normally in the low 50's), & immediately ordered an EKG for the next day. During the EKG, my pulse dropped to 36 bpm. I have no side effects of this, like lightheadedness when I stand up, or anything else.
My oncologist had reviewed the EKG before I even got out of the hospital, & called me. He had ordered an echocardiogram for the next week, along with the installation (stick to skin) of a heart monitor. He also immediately (Aug. 27) suspended both the Orgovyx & Nubeqa doses.
A lab test on Sept 7 showed that my testosterone has started to rise from "undetectable". I will get another lab test later today & report its values.
I wore the heart monitor for two weeks, & then mailed it to the lab for data extraction & analysis. I've received the report & it's 26 pages, mostly graphs & tabular data. My initial reading of the report shows no significant anomalies (& NO AFIB!) other than the low pulse rate, which has slowly risen. I will see the cardiologist on Nov. 5 for a full explanation.
It seems that the hot flashes have diminished slightly, but that could be the cooler weather.
I will see my oncologist on Nov. 11, & I expect the Orgovyx will be dead in the water.
-
Like -
Helpful -
Hug
1 Reaction@readandlearn
Testosterone has risen from 20.0 4 weeks ago to 350.0 today, which is well into the normal range. That is a rise from undetectable to 350.0 in six weeks, which is a lot faster than when I was on Lupron, when it took 9 months from my last injection of Lupron to rise to 350.0.
Why the hot flashes continue, I do not know.
-
Like -
Helpful -
Hug
3 ReactionsI was on Orgovyx for 12 months and experienced about 6-8 hot flashes a day. No fatigue or mood swings, but even though doing weight resistance 3 days a week I lost muscle tissue that was noticeable on arms and legs to the extent that significant wrinkles appeared. After being off Orgovyx for 30 days the hot flashes are down to about 2 a day and with weight training the wrinkles seem to be lessening.
-
Like -
Helpful -
Hug
4 ReactionsI suffered from the same problem for 2 years. I’m now 45 days done and they have slowed down to one every hour or so. I’m looking forward to none, but I know it’ll be a while. I also gained 25 pounds in my waist and that really bothers me. I’ve been using a trainer for the entire treatment program. Just keep going is my motto.
-
Like -
Helpful -
Hug
3 Reactions@azdavew That's a lot! I've been on Orgovyx 7 months now, and I started out getting 6-10 hot flashes per day. That's gone down considerably, to 2 or 3, and with less intensity. Hopefully yours will decrease over time, too. Meanwhile, I found that it helps to have a ceiling (or other) fan running gently in the bedroom overnight, regardless of weather. When you toss the covers during a hot flash, the air movement provides instant relief.
-
Like -
Helpful -
Hug
5 ReactionsBeen on orgovyx 1 year now. My hot flashes used to be like yours, (I had cold flashes too, very strange), but 3 or 4 months ago they calmed down. Still get them a 3 or 4 times per day but very manageable.
-
Like -
Helpful -
Hug
4 Reactions@guybe " Meanwhile, I found that it helps to have a ceiling (or other) fan running gently in the bedroom overnight, regardless of weather. When you toss the covers during a hot flash, the air movement provides instant relief."
Yes.
-
Like -
Helpful -
Hug
1 Reaction@jeffmarc Thanks, that's helpful.
@jeffmarc
I've been on orgovyx for 3 weeks, no hot flashes yet. When do they start?