What's your experience with Orgovyx (relugolix)?

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.

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.

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.

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

Just past the four month point of Orgovyx with two more to go. LDR brachytherapy in early October, IMRT at present with six more treatments to go. PSA prior to starting Orovyx was 15.4, the three month reading was 0.3. Testosterone went from 582 to basically zero. Hot flashes have been intermittent, albeit annoying as they have impacted sleep. Fatigue has become increasingly evident, although the concurrent radiation may be a co-contributor. Weight gain has been negligible as has muscle loss (didn't have much of either to work with). For the most part, my blood panel has been relatively unaffected by the Orgovyx.

I will be starting Orgovyx (relugolix) soon. I am considering waiting until we get back from an upcoming road trip to see family, thinking I might not want to have to have my first experience with any side effects while on that trip.

Does anyone recall whether their side effects were essentially immediate upon starting the drug, or was there some period of time before the side effects began to show up?

Thanks!

Although it lowers your T levels quickly - within 1 month - I felt no side effects until perhaps the end of the second month - mild hot flashes.
They did progress (now in my 5th month) but the worst side effect for me is the insomnia. Never had trouble sleeping and usually fell right back to sleep even after getting up to pee.
Now it’s wide awake, toss and turn….Don’t think a trip - even a few weeks long - will be adversely impacted by Orgovyx but everybody’s different.

I also delayed Orgovyx but there was really no reason to. After 1 month, I had zero side effects and asked my RO for a T test to be sure it was working.
I've been on it 8 months now. I also take Abiraterone.

I've been pretty lucky with SE's I see a loss of muscle mass by my reduced maximum in the gym but no obvious body changes.

And very limited and mild hot flashes, no fatigue (not even from RT).

Like @heavyphil my sleep isn't great. Melatonin helps a little (sometimes) and I've started "mindfulness" which I was sceptical about but may be helping. If not enough, I plan to consult an onco-psychologist.

Loss of libido yes but not important for me.

Not happy about the probable loss of bone mineral density but trying to reduce the impact.

So it really depends. Everyone says it helps to be fit and active (which I am) so it could be that but as heavyphil points out, everyone is different.

My first side effect, hot flashes, occurred on day 28. Having said that I did have a minor upset stomach on day one after taking the loading dose of 3 tabs.
I do not know how long you will be on O, but please be conscious of your weight, muscles and bones through diet, cardio, aerobic and weight bearing exercise.

Stay Strong Brother.

I waited to start ADT because I was going to be off grid for a couple of weeks (as in 150 miles from the nearest town/airport/road). But, like others have mentioned, I probably could have started prior to the trip without consequence. I essentially didn't notice any side effects (perhaps outside of worsening sleep) for a couple of months. The two month point is roughly when my radiation routine started and when the various side effects became noticeable.