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.

toolbelt | @toolbelt | Oct 10 9:19am

My hot flashes began on Day 41.

Stay Strong Brother, We Got This.

stargasir | @stargasir | Oct 10 9:56am

We're all different...! Orgyovix for 9 months now and only 1-3 'flashettes' per day - very manageable. No change when I added Ztyiga, BUT massive increase in fatigue. I intend to stop Abi/Pred after 12mo because of the fatigue. However, I will continue with Orgyovix for the second year of my sentence as I appear to tolerate it well. I was on orgyovix alone Jan & Feb this year and could still manage 2 hours of soft doubles tennis. Not an hour is exhausting, can only walk (trudge) for 15m before a rest and a 30-60m nap every day around 1pm. Anyone elso got this pattern?

Jeff Marchi | @jeffmarc | Oct 10 10:33am

In reply to @mjm8491 "@jeffmarc I've been on orgovyx for 3 weeks, no hot flashes yet. When do they start?" + (show)

@mjm8491
Some people don’t get them, Others get them right away and they are severe. Some people just get light ones and never get real severe ones.

After six years on Lupron and getting hot flashes constantly, I switched to Orgovyx. My hot flashes stopped for five months. Then they came back and they’re a little milder and less frequent than they used to be, but they can be more serious at times.

I think you got the idea, No way to know when or if you’re going to have that problem.

georgemc | @georgemc | Oct 10 12:53pm

I was blessed. Only on Orgovyx 4 months, concurrent with proton radiation. Started having very minor hot "flushes," as I called them. Nothing even close to debilitating, or affecting my day to day life. It was more a nuisance, easily dealt with my wearing light weight clothing, and sleeping in shorts and t-shirt, uncovered, or only covered with a sheet.

forresterra49 | @forresterra49 | Oct 11 7:05am

Just finished 45 sessions of IMRT and am starting month eight on Orgovyx. Hot flashes continue but only a minor annoyance for me. Been keeping up with resistance training about 4-5 days a week and two miles on the treadmill. I think that’s kept the weight gain in check but my belly seems fatter. Some breast tenderness but it’s lessened intensity over time. Sleep perturbations from hot flash, restless leg and my CPAP are bothersome.

mjm8491 | @mjm8491 | Oct 11 7:36am

In reply to @jeffmarc "@mjm8491 Some people don’t get them, Others get them right away and they are severe. Some..." + (show)

@jeffmarc
How in the world have you gone years with no testosterone?

chippydoo | @chippydoo | Oct 11 8:20am

In reply to @mjm8491 "@jeffmarc I've been on orgovyx for 3 weeks, no hot flashes yet. When do they start?" + (show)

@mjm8491 We don't necessarily get them. Some struggle with multiple HF's day and night and some of us might experience few to none. While on ADT I experienced 2 grade 1 hot flashes and that was it. You might be one of the lucky ones. I know I was.

Chip | @chipe | Oct 11 9:54am

Been on Orgovyx since April. My hot flashes are frequent and severe, along with other side effects. That doesn't mean they will happen to you! I have tried everything, including the Embr 3, but that didn't work for me; it is fantastic for others.
-During the day, I carry a small battery-operated fan https://www.amazon.com/dp/B0G78CW3RV. I have three: one for carrying around, one for next to my recliner while watching TV, and one by my desk.
At night, I use gummies and a bedstand fan that I turn on and face when I get them during the night.https://www.amazon.com/dp/B0D6VSV4B9

!!!!!NOTE: I am not affiliated with Amazon, nor do I get any kind of kickbacks, etc. for showing you what I use!!!

Jeff Marchi | @jeffmarc | Oct 11 10:44am

In reply to @mjm8491 "@jeffmarc How in the world have you gone years with no testosterone?" + (show)

@mjm8491
I am one of the few people that doesn’t have fatigue from low testosterone. Sure, it damages the muscles a lot, But I exercise to get around that. I walk on the track twice a day, a mile as fast as I can go. That helps my bones and I’m also been on bone strengtheners for the last eight years. I get some hot flashes, but not many any more.

My testosterone is consistently under eight.

For some people it just isn’t that big a problem.