oral LHRH Relugolix

oral LHRH Relugolix

User

Posted 07 Feb 2024 at 13:18

I am curious as to if ANYONE in UK has managed to get the LHRH antagonist Relugolix / Orgovyx for high risk Pca as a adjuvant hormone therapy. I know its now available in USA and EU but NICE being super slow as usual, its not approved on NHS probably for ages - but can it be prescribed privately through an oncologist at a much cheaper and reasonable cost than its headline cost as it is in the states and EU ?

User

Posted 07 Feb 2024 at 13:18

User

Posted 06 Nov 2025 at 20:51

Thanks Adrian. I wouldn’t say I’m depressed, just a little down some days, and yes, my wife has also called me a miserable git recently 😀.

User

Posted 07 Feb 2024 at 13:26

I don't believe it's been put forward to NICE yet, which is up to the manufacturer.

I think it would still need approval by MHRA even for private use, but I'm not completely sure about that.

EDIT: I see it is already approved by MHRA for use in England, Wales, and Scotland, so it may be available privately.

Edited by member 07 Feb 2024 at 13:40 | Reason: Not specified

User

Posted 28 Aug 2025 at 13:35

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 19:13

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

User

Posted 06 Nov 2025 at 09:04

Originally Posted by: Online Community Member

I do feel down these days. Is it the pills or is it life in general? I think it's the pills as I'm not one to get down. I take myself off for a long walk and that helps.

Hi, Davey.

You are bound to be feeling down, mate. You've gone through a lot in the past few months. Diagnosed with PCa. Told it might be stage 4, then told it wasn't. Now side effects of hormone treatment with the thought of radiotherapy to come.

On top of this HT can cause depression.

https://community.prostatecanceruk.org/posts/t31833-Mental-health-issues-caused-by-hormone-therapy

You'd have to be a man of steel not to feel a bit pi**ed off.

I'm pretty upbeat, but at times I feel depressed. My wife, a woman of few words, tells me that prostate cancer has made me a miserable git. 🙂

Edited by member 06 Nov 2025 at 09:13 | Reason: Additional text

User

Posted 03 Dec 2025 at 10:34

That is good news Lesley. I hope your husband's recovery continues.

Best wishes,

Liam

User

Posted 09 Jan 2026 at 14:35

The time you need to spend on Relugolix is much more dependent on your initial diagnosis and staging. (much less so with PSA at diagnosis as some potentially aggressive tumours can have low PSA ) . ie T Stage/ Gleeson score is much more important. Timing has already been reduced so your consultant may err on the side of caution in not going any shorter - only they can recommend that in your particular case usually in addition to radiotherapy

I see you're a T3b (like myself but Gleeson 9 (not 7 like you) I'm also expected to be on it for around 2 years,

so I expect for you, the T3b is the main factor for HT time period. despite a clear petscan.

Edited by member 09 Jan 2026 at 14:44 | Reason: Not specified

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User

Posted 07 Feb 2024 at 13:26

I don't believe it's been put forward to NICE yet, which is up to the manufacturer.

I think it would still need approval by MHRA even for private use, but I'm not completely sure about that.

EDIT: I see it is already approved by MHRA for use in England, Wales, and Scotland, so it may be available privately.

Edited by member 07 Feb 2024 at 13:40 | Reason: Not specified

User

Posted 13 May 2025 at 08:18

Thankfully I haven't reached that stage just yet. However currently my PSA reading is bouncing up and down madly whilst trending upwards.

I have also had a triple CABG, and my new NHS consultant told me that if the worst comes to the worst he would prescribe Relugolix, which as Andy points out is now approved by NICE.

Jim

Reality is merely an illusion, albeit a very persistent one - Albert Einstein

User

Posted 30 May 2025 at 17:46

My husband has had this prescribed. Been on it for 6 weeks now

User

Posted 30 May 2025 at 18:11

I’ve started on Relugolix beginning of this month. Had my first Radium 223 on the same day and Zolandronic acid the week before.
Not felt that well since I started on it to be honest. But I’m also weaning down the steroids at the same time.. and after talking to my palliative nurse today I’m wondering if I should actually be increasing then back up to 2mg instead of the 0.5mg I’m now on.

So yes I’m on it but not sure what’s making me feel so crap…

Good luck

Phil

User

Posted 03 Jun 2025 at 09:03

Hi. Just kinda bumping this a bit as I’m still suffering side effects but no idea if it’s the Orgovyx, the Radium or the Zolandronic Acid or even that I’ve weaned down from 2 mg Dexamethazone to 0.5mg…!

Sagee, how is your husband doing on the Orgovyx?

Cheers

Phil

User

Posted 03 Jun 2025 at 09:49

Cutting down the steroids will have that effect goalhanger. Perhaps get your bloods done too if you haven't had a blood test lately.

User

Posted 03 Jun 2025 at 10:06

‘Cutting down the steroids will have that effect goalhanger. Perhaps get your bloods done too if you haven't had a blood test lately.’

Hi, yes I was wondering if I should in fact get the steroids put back up. I may have to put up with a fat belly and face to feel better.
I also spoke to my GP about my appetite and bad mouth taste and she did a blood test last week. I am speaking to her on Thursday.
It seems I’m low on B12 , low white blood cells and verging on diabetic. I have 3 blood tests every month for the Radium, Zolandronic acid and for my monthly consultant meetings and generally they’re ok.

Cheers

Phil

User

Posted 11 Jun 2025 at 12:33

I'm due to start Relugolix next Tuesday, read up on side effects etc. so started the gym weight training 5 weeks ago (up at 5:00 gym at 6:00 back in bed by 7:00 for a couple of hours Mon to Fri) I've been told by my cardiologist that the benefits outweigh the risks so here go's. will update as and when. good luck everyone.

User

Posted 11 Jun 2025 at 15:19

Hi Tombone

My husband has just been prescribed the same HT. He also has a Gleason score of 3+4 his first psa was 24 he is 63 years old and had a heart bypass in 2007. Surgery is not advised so he will be on this drug for 6 months with radiotherapy starting in 3 months. I will be interested to hear how you and my husband tolerate it.
Lesley

User

Posted 12 Jun 2025 at 12:55

Hi Lesley, I've also had heart surgery (double bypass) in 1995, I'm 66 years old diagnosed in 2015 same as your husband (3+4) and was advised against HIFU treatment by Prof Emberton in 2017 as the cardiac risk outweighed the benefits, now its the other way around, my cardiologist has said that the benefits outweigh the risks, I also have a pacemaker defibrillator which was fitted in 2016 and my concern was that as relugolix interferes with the electrical workings of the heart and as I have an electrical implant what will the effects be on me? to further add to my trepidation I am the first and only patient at the hospital to be given this medication but as I'm already metastatic lets give it a go.

starting on Tuesday as I have a pre booked family event this weekend and I need to be fit for that :)

I will keep you posted what side effects (if any) I get, it would be good to know how your husband is getting on.

Best regards

Tombone.

User

Posted 19 Jun 2025 at 11:12

Hi Tom

How are you doing since starting the hormone treatment?
I read your bio I really can't believe you weren't offered any treatment until this point. Surely there must of been some form of treatment available for men who have heart problems!

Will keep you posted in how my OH gets on.

Take care

Lesley

User

Posted 22 Jun 2025 at 13:12

Hi Lesley, all available treatments carried an unacceptable risk to my heart, cancer kills slowly but a heart kills in a flash, so I waited for 10 years until an acceptable treatment was available. My cardiologist stated that the benefit outweighed the risk so I agreed to take the HT.

The reason i waited for a tablet for was that injected HT caused a testosterone flair which was the most dangerous phase of HT treatment, however the Relugolix in tablet form had no testosterone flair associated with it, also as it is in daily tablet form, if I get any unmanageable side effects I can stop immediately and its out of my system in a short time unlike the injection which is in my system for months.

So far after only 6 days (including a load dose on day one) I have not noticed any side effects and I am continuing with the weight / resistance training at the gym to try and offset any weight gain and fatigue caused by HT.

I had my PSA and testosterone levels checked before starting the HT (PSA 34.5 and testosterone within normal limits) and will have them tested again before my next oncology appointment in 3 weeks.

I will keep you updated.

how is your OH doing?

User

Posted 05 Jul 2025 at 12:05

Well its been 18 days on relugolix and the PSA test on Thursday 3rd June was 13.8 that's a 60% reduction! so far side effects have been tiredness (in bed at 19:00 till 05:00) and this morning i had my first hot flush and sweat's buts that's about it "so far" my oncologist spoke with me last night and he wants to see me next friday.

ok so far will update as and when. good luck all. . . .

User

Posted 07 Jul 2025 at 20:02

Really good to see your PSA reduction so soon with the Relugolix Tombone. Let’s hope it continues .
I see your suffering the tiredness though. I’m still getting that too, although can’t say for sure what’s causing it. I’ve had a 5 week break from the Radium and they say side effects are minimal with that but who knows.

I may ask my Onco about changing from the Relugolix . I’ve been on them all except Decapeptyl. See what he says as the tiredness is getting me down now.

Still getting taste issues and poor appetite but again what is the cause ??

Take care

Phil

User

Posted 07 Jul 2025 at 21:01

Hi Tom, great news re the psa! My husband is just behind you by about 5 days and he has also experienced some hot flushes, he hasn't complained of tiredness but then again he can sleep at the drop of a hat.
Keep going living for today!

Lesley

User

Posted 07 Jul 2025 at 21:06

Hi Tom

Great to hear your PSA has gone down so quickly. My husband is just behind you by around 5 days and also experiencing some hot flushes but they haven't been too bad so far. He hasn't mentioned feeling tired, that might kick in also. Keep us posted on your progress.

Best of luck
Lesley

User

Posted 08 Jul 2025 at 14:45

Sorry for the 2 replies I received an error message and it didn't look like the first reply had been posted'

User

Posted 19 Jul 2025 at 10:29

just starting my 2nd prescription of the tablets, tiredness getting less, have a bone scan for 30th as i am getting hip joint pains again and just checking it's not cancer before i have steroid injections (my right hemi pelvic has already been irradiated so lets hope its just old age aches) had only a couple of sweats but missed one evening meal and had palpitation's with heart rate up to 150 bpm whilst lay in bed relaxing (my daughter has bought me a fit bit watch to monitor my signs whilst at the gym and also thru-out the day) so not missed one since. will update after scan :)

User

Posted 21 Jul 2025 at 20:15

Hip joint pain (and sometimes knee pain too) can be caused by starting hormone therapy. It usually goes away after a while. There was a suggestion by someone else on this forum that this is because a change in Testosterone levels changes ligament tension holding joints together and it takes a while to get used to the new norm, but I've never seen this mentioned in medical papers, although it is a common side effect.

User

Posted 23 Jul 2025 at 13:27

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 23 Jul 2025 at 23:03

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 12:41

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 13:44

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 13:35

Tombone

User

Posted 28 Aug 2025 at 19:13

User

Posted 18 Sep 2025 at 15:14

Hi all, Mrs Tb having new nails so just a quick catch up,

Just over 3 months now and the side effects really showing, scrotum and testicles virtually non existent and penis same, hot sweats on a regular basis three or five times a day (sometimes very inconvenient) was checked for kidney pains yesterday (deep dull throbbing pain either side of spine between ribs and hip's) but all clear, urine sugars high but blood sugar normal full Gp mot and given all clear, waiting for blood test results, it's really uncomfortable getting a "glow on" and a fan makes me feel cold so just have to suck it up and carry on, had a little cry the other night which I haven't done since I was a toddler cos its all getting difficult but somehow felt better after.

Hope my blunt and honest post's are helping someone and good luck to you all.

"Life's a b****, then you die" :)

User

Posted 18 Sep 2025 at 15:28

Hot off the press. . .

Just had a message from my Gp regarding blood tests, PSA 0.4 . .

WOW!!!!

all other results very good and much better than expected.......

Looking forward to a holiday from this medication!

User

Posted 18 Sep 2025 at 16:59

Hi Tombone, Brilliant news about your PSA. I’ve been on the Relugolix for around 6 weeks now. My PSA was 7.14 when my journey started in May. No idea what it is now. I’ll ask my GP for another test. The only noticeable side effects for me are my shrinking penis, and the fact that for the first time since puberty I have absolutely no interest or desire for sex. So far I’ve been spared the hot flushes, and not feeling emotional or depressed. I’m actually losing weight probably due to giving up alcohol since end of May. I’m on the Relugolix for 6 months, so I guess there’s plenty of time for more side effects.

User

Posted 19 Sep 2025 at 01:14

One of my mates, who has BCR following RARP, has just been prescribed Relugolix tablets, prior to starting salvage radiation treatment.

Edited by member 19 Sep 2025 at 01:16 | Reason: Typo

User

Posted 09 Oct 2025 at 15:44

Update, saw the oncologist on Monday, PSA now at 0.35 so still reducing, weight stable at 7kg less than when I started, still waiting for urology appointment and nipple radiation (to stop breast's growing) and now on ibuprofen plus paracetamol for pain, I refused medication for the sweating as I'm already taking 22 tablets a day for my heart so don't need any extra side effects. Good luck everyone will update as needed

User

Posted 05 Nov 2025 at 23:12

Hi Lesley,

I am just 5 months behind your husband's situation. Just been put on 6 months oral Relugolix, with RT to start in mid Feb. I am 61, T2 staging and PSA of 7.5. Was offered Bicalutimide instead but opted for Relugolix as the side effects seemed less.

Liam

User

Posted 06 Nov 2025 at 08:03

I've been on Relugolix for just over 3 months now. I'm T3a - Gleeson 4+3 = 7. Age 69, 70 next month.

Original PSA 7.15 in May. Tested again 2nd Sept after just over 1 month of Relugolix - PSA 0.57 which certainly shows they work!

Side effects: No libido at all, not even a twitch down there! Hot flushes started after about 2 months, but I can put up with them, it's no big deal. I do feel down these days. Is it the pills or is it life in general? I think it's the pills as I'm not one to get down. I take myself off for a long walk and that helps.

I should be getting 20 sessions of radiotherapy in January. Waiting for the appointments

User

Posted 06 Nov 2025 at 09:04

Originally Posted by: Online Community Member

I do feel down these days. Is it the pills or is it life in general? I think it's the pills as I'm not one to get down. I take myself off for a long walk and that helps.

Hi, Davey.

On top of this HT can cause depression.

https://community.prostatecanceruk.org/posts/t31833-Mental-health-issues-caused-by-hormone-therapy

You'd have to be a man of steel not to feel a bit pi**ed off.

I'm pretty upbeat, but at times I feel depressed. My wife, a woman of few words, tells me that prostate cancer has made me a miserable git. 🙂

Edited by member 06 Nov 2025 at 09:13 | Reason: Additional text

User

Posted 06 Nov 2025 at 20:51

Thanks Adrian. I wouldn’t say I’m depressed, just a little down some days, and yes, my wife has also called me a miserable git recently 😀.

User

Posted 06 Nov 2025 at 22:33

I started Relugox on Saturday (had to wait til I had my Pet Scan)

Saw Oncologist today - Scan was clear!

So final staging T3b "one seminal vesticle partially affected - Gleeson 9

Radiotherapy due in Feb and asked about Brachy Boost - Barts dont do it themselves but will get back to me

as it's done at UCL if suitable for me.

Early days yet but I had a terrible experience on Sunday/Monday night about 36 hours after starting the Relugolix

Woke up middle of the night feeling really anxious/unwell/felt like I was going to die! - consultant thinks it most likely was due to the rapid drop in my testosterone which had been as high as a 20 year old (I am 62!) As you know if you take it you start with a loading dose of 3 tablets on the first day.
Combination of that, stress waiting for scan result really hit me but feeling much better today having had clear result and treatment plan. Need to stay on Relugolix for 2 years.

Apart from getting a bit warm at times and putting on the fan, side effects yet to kick in noticeably as it been less than a week. Libido no doubt gone but the stress alone will have killed that.

Edited by member 06 Nov 2025 at 23:21 | Reason: Not specified

User

Posted 07 Nov 2025 at 14:10

Hello Patrick, sorry to hear about your reaction to the treatment. I was on Prostap 3 with Abiraterone for 15 months until March when the oncologist agreed I could stop as my PSA had remained undetectable since November last year following Radiotherapy. A recent blood test showed a slight increase to 0.9. We discussed resuming HT which I had found almost intolerable and agreed Relugolix if my reading increases by our next meeting on 19 December. I was T3b Gleason 8 with high risk so I am expecting to have to resume the awful treatment. I have read the other guys' experiences on Relugolix and will be interested to hear yours in the coming weeks. Prostap 3 was bad enough however if I don't read that your side effects settle down I might resume poison Prostap 3.

Best wishes.

John

User

Posted 03 Dec 2025 at 10:23

Hi Liam

My husband has had a few of the usual side effects but he has tolerated it well. He finished his RT at the beginning of October and that all went well with a few bowel problems around the third week. The nurses gave him a fybogel drink which has worked a treat and everything has settled down again.

Best of luck with your treatment

Lesley

User

Posted 03 Dec 2025 at 10:34

That is good news Lesley. I hope your husband's recovery continues.

Best wishes,

Liam

User

Posted 03 Dec 2025 at 12:09

Just to give you an update since my initial bad experience 36 hours after starting Relugolix (apparently due to my normally quite high testosterone dropping rapidly)

It's been about a month now, nothing noticeable apart from mostly just the expected hot flushes, and getting very sweaty at times (excess sweating is mentioned as possible side effect). I put the fan on at home for about a minute, then get too cold. A handful or so of flushes a day maybe.

Think I should get a handheld fan for cooling when I need it.

Trying to keep up my weight training and exercise to reduce long term term effects on muscle etc. Also have a Dexascan in a few weeks for baseline bone condition check.

Mentally feeling quite good recently so no depressive symptoms brough on by Orgovyx at least for now.

Weird thing is, my testo should be at castrate levels now but unusually woke up the other morning, with what felt like an erection (normally never notice them) I so think the exercise inc cycling is helping blood flow down there so maybe that is something but I haven't tried testing any arousal as libido is minimal as expected.

I dont think my initial experience was typical and we all react differently so wouldn't let that discourage you from trying it if the alternative is not tolerated as well.

My PSA on diagnosis (late Aug) was 15.6 and before starting the tablets was 15.4 (late Oct) so at least wasn't going up!

Next PSA I thing isn't scheduled til Jan so overall initial effect of the ADT not yet known.

Edited by member 03 Dec 2025 at 12:24 | Reason: Not specified

User

Posted 03 Dec 2025 at 16:43

Patrick, thank you for the update on your experience with Relugolix. It is reassuring that the severe initial side effects did not continue. I will post my experience in due course. Having been feeling almost normal since June I am very apprehensive about restarting HT. I will get by the festive season before taking the loading dose. John

User

Posted 04 Dec 2025 at 19:25

So far after a week, positive experience with Relugolix.

More exhausted when walking, so have increased my episodes to keep fit.

Diagnosed 3 weeks ago, Gleeson 7 (3+4). Radiotherapy in new year.

Recommend drug at present. No mood change, and just been careful with food and extremely limited alcohol.

See a 12 month course in USA costs £20,000, so must be a highly rated medication

User

Posted 29 Dec 2025 at 11:40

UPDATE.

Hi Guy's my latest PSA was 0.18 which is down from 42.0 ish 6 months ago, still getting a "bit of a glow on" every now and then and managing to maintain my weight, still at the gym 06:00 Monday to Friday resting at the weekend, i have an appointment with urology in Jan regarding the shrinkage issues plus a little discussed side effect of the tablets which is causing an increase in my cholesterol levels which have increased from 0.3 to 0.52 which is pretty high for someone with my cardiac conditions, i can't tolerate statins and have been in ezetimibe tablets and inclisiran injections every 3 months, there are other more potent cholesterol reducing injections available but they are only administered in a lipid clinic therefore i have been referred to a lipid clinic good to see the tablets are having positive effects on the PSA levels of you all, will update early next year.

happy new year everyone!

User

Posted 09 Jan 2026 at 14:24

Hello!

Its been a while since my last comment but I check the website from time to time.

I have been on oral Relugolix for 9 months now. The usual side effects, prominent feature being fatigue and diminishing muscular strength. The testes are diminishing too, at this rate they will disappear all together soon! No libido or erection at all. Weight increase is sort of under control, gained about 3-4kg, 81kg before treatment. Cutting out alcohol completely helps. My PSA was 3.5 back in February 2025. Finished Radiotherapy by early August. Started HT in April and PSA was down to 0.2 in May.

Initially, I was told I will be on on HT for 3 years but reduced that to 2 years when I met the consultant in October. They think I am tolerating Relugolix well. Given the relatively low PSA before the treatment, do I need to take Relugolix for 2 years?

I am told the side effects get better after a year, is this true?

Edited by member 09 Jan 2026 at 16:59 | Reason: More information

User

Posted 09 Jan 2026 at 14:35

I see you're a T3b (like myself but Gleeson 9 (not 7 like you) I'm also expected to be on it for around 2 years,

so I expect for you, the T3b is the main factor for HT time period. despite a clear petscan.

Edited by member 09 Jan 2026 at 14:44 | Reason: Not specified

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