oral LHRH Relugolix

User

Posted 23 Jul 2025 at 14:27

Hi guys. I see my consultant tomorrow morning and gonna ask about the Relugolyx . I know it is for advanced PCa so there isn’t much left I haven’t tried.
But be good to know if he thinks it’s that causing my tiredness. I usually have a good 2 to 3 hour nap in the afternoon and still going to bed at 8 ish.
I don’t think the Relugolyx is affecting my taste / smell issues.
Anyway good luck 👍

Phil

User

Posted 24 Jul 2025 at 00:03

In the UK, Relugolix was allowed by NICE for all situations where hormone therapy is used with Prostate Cancer, not just advanced.

In the EU, they only applied for use with advanced prostate cancer, so it's use may be more restricted there unless it's been extended since the original application.

The tiredness is caused by lack of Testosterone. The ARPIs (Abiraterone, Enzalutamide, etc) also contribute to tiredness.

It would be worth asking for a blood test to check FBC, iron, Vitamin B12, in case any of those are out of spec.

User

Posted 27 Aug 2025 at 13:41

HI all, latest update, saw my oncologist last week, my PSA is now down to 1.8 which is really amazing!, side effects are now starting to show, i get regular hot sweats around 2 or 3 per day, heart rate seems to be steady and blood pressure ok, issues i have discussed with my oncologist are that my penis has shrunken . . . . a lot . . .making it difficult to urinate as there's not a lot to hold and point, also my testicles have shriveled to around the size of butter beans, but i suppose this was expected and is a common side effect with hormone medication.

The hip pain has been solved with a change from paracetamol x 8 per day to ibuprofen x 3 per day good news as i can't have radiation in that area for quite some time yet and the tiredness has reduced greatly, i do find that i have a lot more energy after a gym session that seems to keep going for the rest of the day, a friend, (whos a professional strength coach) said that its probably the endorphins released during and after exercise so I'm sticking with the 5 mornings a week resistance training as this has also prevented me from gaining weight (in fact i have lost a stone) and has resulted in muscle mass gain and not muscle mass loss as was expected.

So all in all some positive's and negative's with one cancelling out the other, i am now waiting to see the urologist to see what can be done regarding the penal and testicular atrophy.

will keep you posted.

thanks for all your support everybody :)

User

Posted 27 Aug 2025 at 14:44

Hi I've been on Relugolix for 1 month now. Noticeable side effects so far: lack of libido, some tiredness. I'm coping fine with it up to now, but it's early days yet.

User

Posted 28 Aug 2025 at 14:35

Hi DaveyH, as I've said exercise really helps with the tiredness so I've joined an exercise on prescription course at a local gym, as for the libido I'm going to be asking the oncologist for testosterone patches as I believe it's a different testosterone to what's produced in the testicle and it can help with libido and sweats etc. ):

Tombone

User

Posted 28 Aug 2025 at 20:13

Hi Tombone, I'm doing some weights at home with a pair of dumbells most days of the week, and increased my daily walking to around 10 to 15,000 steps minimum. I've knocked alcohol on the head. TBH I needed to as I was drinking a bit too much. Zero Guinness is now my friend 😁. Result is I've lost nearly a stone in the last couple of months and feeling fitter than before I knew I had PCa. I'm seeing someone at my local hospital to talk about vacuum pumps. Like you, my penis seems to be getting smaller week on week

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