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 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

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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

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