Orgovyx - asking for advice

-I took mine in the morning and initially a mild headache which resolved itself after a couple of weeks.
-Soft erection which would be useless for sex. Wasn't interested.
-Pretty much felt run down. EXERCISE HELPS for a few hours and helps sleep. I mountain biked and did spin classes at the gym. I'm kind of over weights but do lift and pull on heavy stuff.
-1 grade 1 hot flash.
-Stayed hydrated.
Pretty much all for me. 3 months post ADT feeling pretty good aside from post radiation bowel and rectum issues.

Hello, TJ1967,
I was only on Orgovyx for two months so a pretty short time. I agree with the advice you have been given. Orgovyx sent my cholesterol sky high, which they told me it would. I had sharp pains in my joints that gradually lessened. Sex drive came back quickly after stopping. Had extreme fatigue. Was somewhat emotional. No hot flashes. Constipation increased the second month. No breast enlargement. Genitals did not shrink. Felt pretty bad the week after I ended it, which is common. Good luck to you!

Hi tj1967, looks like you got a lot of excellent replies and advice. The only issue I didn’t see would be the risk of worsening coronary artery potential. I started Orgovyx in December 2024 and after 6 months I had some serious coronary issues where I had all the symptoms of a heart attack on the way. Had to stop the Orgovyx did some fast heart r elated test in Boston at Tufts and I have extensive stenosis in my arteries. I do have one stent in a major artery fortunately I can be controlled with some serious drugs. Well I was off the Orgovyx for only 9 weeks and my PSA and testosterone numbers did a serious climb from be undetectable. So no choice but to get back on the Orgovyx which makes me a little nervous. I had 44 radiation treatments from March 21st to May 21st. Side effects were no picnic. I was a Gleason 7 (4+3) with seminal vesicle invasion, cribriform & PI- RADS 5/5. The hot flashes are a pain but keep a small high speed fan handy and it works miracles. My biggest complaint would be my legs are weak and I can can’t walk any distance. Wishing you all the best and staying positive is extremely important.

Just hit the 4-month mark on Orgovyx. No surgery here but my experience so far with the drug has been...

- 1st month was a system shock with extreme fatigue and hot flashes being the culprits. Found that exercise, even if just walking a couple miles, helped tremendously with fatigue. Sugar free popsicles knocked back the hot flashes when they came on. After the first month or so, either the side effects calmed down some or I just got used to them. Still here, but not really bothersome.
- Zero interest in sex and don't bother to try
- About 2 months in, noticeable change in physique. I have not had a problem with weight gain due to cutting out all processed sugar, but I am certainly rounder (Buddha Belly) with apparent loss of strength. I began a resistance workout regimen, and it has not gotten worse, but I am far from normal yet.
- I dream more than I ever have when I sleep. Even if it's just a quick nap in a recliner.
- I take my dose at midday. Works best for me between the ARSI and heart failure meds I also take.
- The dose you specify is pretty much the standard.
- I'm only one week into radiation so I won't know how that goes for a few weeks yet.
- As I said, I'm also a heart failure patient so I have a Cardiac Oncologist as part of my care team. He keeps the rest in line to treat me without stopping my heart. So far, so good.

Best wishes, we got this! 👍👍👍

@kenporter
I was on Zytiga and it caused me to have four Afib Events, The third of which put me in the hospital for four days because they couldn’t cardiovert my heart. They tried shocking me twice, but my doctor had given me an antibiotic that messes up my electrical system, So for four days, the half life of the antibiotic, I had to lay in bed with my pulse at 125 lasting down And 175 standing. Late on the third day, they gave me metoprolol And within an hour, my pulse went to normal. I was immediately pulled off zytiga by my oncologist.

Right after that I started Orgovyx and Nubeqa. I’ve been on it for two years now And it has caused me no heart issues. I take three different blood pressure meds because of Zytiga And I’ve been able to reduce one of them in half. I’ve had no blood pressure or heart issues since I switched. I guess the worst condition your heart is the more likely a problem is to occur. I do have aortic and coronary atherosclerotic calcification and Orgovyx has not caused any issues.

I’m just trying to point out that even having heart issues, it doesn’t seem to have caused problems with my being on Orgovyx.

@jime51 To follow up, both PSA and Testosterone have been undetectable since May which was one month following 44 weekday radiation treatments and after 5 months of Orgovyx. PSA had dropped from 6.4 to 3.1 after 7 weeks of Orgovyx, right before beginning radiation.

My experience with the side effects is that they're intermittent. I believe but cannot prove, that being rested helps. I take mine at 1:30pm which is relates to the many other meds I take, as the ideal time. I'm also on Abiraterone as a part of an "intense" therapy so my side effects are worsened which they warned me about.

Exercise is a must, agree with everyone commenting. So is hydration any time you're on strong meds.

I harbored a worry about losing interest in the opposite sex since we are "chemically castrated" after this treatment. Not so. All the same visual stimuli and interests are still there fully. I haven't felt good enough to want it (nausea, fatigue, mental fog and hot flashes) the few weeks I've been on it to want it much. So there's that.