ADT - Sleep Issues - Side effects - Prostate Cancer UK Online Community

User

Posted 28 Dec 2025 at 10:25

I am one month into ADT (Relugolix / Orgovyx). I can cope with the hot flashes OK as the are short-lived, just a few minutes maybe. I have learned to dress in layers which helps quick removal of clothing if necessary. What is causing me the most annoyance however is insomnia.

A bit of background first. I am a 61 year old Irish man. Gleason 8 (4+4). Staging T2. SpaceOAR and gold fiducials insertion in two weeks time. EBRT in 4 weeks tine. I am currently waking every hour during the night, it is not always with a need to urinate, but this is much more frequent than before starting ADT, it can be caused by a hot flash.

I often lie awake for two hours before getting back to sleep. I am obviously not getting any REM sleep and am exhausted during the day.

I have tried liquid magnesium glycinate and valerian drops for the past week. Slight improvement but only slight.

I have heard of melatonin tablets but these require a prescription in Ireland, I could travel to Northern Ireland where they are available over the counter I believe. I dont drink coffee or tea after 5pm. I dread to think what another 5 months of this will be like.

Has anyone else experienced this? Any suggestions?

User

Posted 21 Jan 2026 at 15:03

Hi Liam, regarding other medication. After SRT I was on Decapeptyl for 12 months ending last September. Onco wanted me to do 24 months but the side effects were ruining my QOL. I experienced all of your side effects, the worst being hip and elbow pain and locking fingers. Hot flushes disappeared quite quickly, insomnia is subsiding as is the joint pain, albeit at a slow pace. Libido is nowhere to be seen. My wife sleeps very well these days. I have no knowledge of alternative meds but from what I have read on the forum, effects vary between individuals. All the best.

Peter

User

Posted 31 Mar 2026 at 19:05

Hi Richard,

It is amazing how one man's treatment and side effects can mirror another's in a different country and health system. I guess it goes to show how the RT treatment is now pretty standardised everywhere.

Just giving you an update as you asked for that. I had to stop using Relugolix after 2 months due to the terrible joint pain in my left hip and left knee ( which had been injured before). I ended up on crutches for 10 days until my consultant changed be to a testosterone blocker called Bicalutamide, with Tamofaxin every second day to prevent gynecomastia. This was much better. The pains went away after two weeks and at least I didn't have to take pain killers at night any more. The sleep did not improve however.

I had my 20 sessions of EBRT after 10 weeks on the HT and it finished two weeks ago. It was in the Northern Ireland Cancer Centre at Belfast City Hospital.

I had SpaceOAR gel inserted two weeks before the RT started. I was advised to come in an hour before the RT session each day to start my preparation. On arrival I used a mini enema, which always worked within 15 mins or less. I would then spend the next 10 to 15 mins drinking 500ml of water so that the exact same amount of water remained in my bladder each day. This left approx 30 mins to wait before my session. I followed the exact same pattern every day.

I dId experience a strong burning sensation in the pelvic area and some nausea on the first few days. I was told this was unusual. It eased somewhat but I did experience a mild burning sensation every single day for a few hours after treatment.

Other than that, the first two weeks went by without any issues. By week 3, I was definitely more tired and by week 4, I was exhausted. Despite the exhaustion, nighttime sleep got even worse with the combination of HT and RT. After 10 days, the consultant prescribed sleeping tablets. With these I was getting 3-4 hours of uninterrupted sleep - which was a big improvement. I stopped these last week as I did not want to become addicted. Sleep has gradually got better, I still wake 3 or 4 times due to night sweats (this aspect is getting worse) but I only need to pee twice now as I am on another drug which helps that issue called Tamsulosin - this has other side effects which you can Google.

The weekend two-day respite from RT treatment always helped me reset and now two weeks on, I feel like my energy is returning a little bit more every day.

Let me know how things are going with you and what stage you are at. If you have other questions you can ask them here or you can DM me.

User

Posted 04 Apr 2026 at 10:26

Hi Matt,

You seem to have a more extreme case of hot flushes than I have had. Luckily mine only happen in the evening after dinner watching tv, and then all through the night - awake 5 or 6 times.

I have finished my RT now - two weeks ago and the intensity and frequency of hot flushes seems to have increased. I will certainly ask my oncologist about cyproterone. It is strange he never mentioned it as he is very involved in research etc.

Thanks for this and so glad to hear that it has made such a difference.

Liam

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User

Posted 28 Dec 2025 at 17:58

Liam, I found I was struggling to sleep with apalutamide, I swapped from taking them at night too taking them in the morning. That did help a bit, now I get up in the morning ,go for a walk, come back and fall asleep.

Thanks Chris

User

Posted 29 Dec 2025 at 08:59

Thanks for that Chris. I am taking my Relugolix at lunchtime, so I don't think it is the timing.

Liam

User

Posted 20 Jan 2026 at 07:58

Hello,

I have been on orgovyx for 9 months now. I take in in the morning around 8:30. It is still affecting my sleep, I take couple of paracetamol tablets before going to bed, it helps with sleeping, I can get up to 4 hours of unbroken sleep. It also helps with joint an muscle aches caused by the medication.

Hope that helps

User

Posted 21 Jan 2026 at 13:02

6 Week Update

I have been on ADT (oral Relugolix/ Orgovyx) for 6 weeks, with SpaceOAR and gold fiducial markers inserted on 13 Jan. I will have 4 weeks of EBRT starting on 16 Feb. ADT to continue until 31 May 2026. I now take the Orgovyx in the morning.

I have been experiencing the following main side effects :

Hot Flushes

I have reduced the intensity of the hot flashes slightly by staying off caffeine and alcohol. I have now bought decaf coffee and teabags so looking forward to seeing if these have a neutral or positive effect.

Insomnia

On recommendation from my local health shop I bought melatonin tablets and valerian tablets. These help me get to sleep initially, but do not seem to be of any use during the night. I wake up every hour due to either a hot flush or shivers (caused by me removing the bed clothes an hour earlier). The other thing that wakes me is leg and hip pain (see below). I have resorted to taking paracetamol. Still awake 4 or 5 times a night, getting about 60 mins of sleep at a time. It is never enough. Does anyone have any other recommendations to aid sleeplessness? I wonder do other HT drugs have similar side effects and might my consultant change ( I still have 4.5 months left and don't know if I can cope with the sleeplessness much more.

Joint Pain

I am experiencing really bad hip pain and pain around the knee (front and back) and in the bone below my knee. This is listed also as one of the main side effects. I cannot bear any weight on my left leg and have been using crutches for the past 6 days. There is no other physical cause for this as I have already been to a physio to have it checked out. Has anyone else experienced this joint pain and have you any recommendations for easing it? Have you experienced this with other HT drugs.

Libido Gone

Libido gone completely for the past two weeks and nocturnal and morning erections also gone for past week. These side-effects were not unexpected and were explained to me, it is really the sleeplessness and joint pain that are causing me the most discomfort and worry.

User

Posted 21 Jan 2026 at 15:03

Peter

User

Posted 21 Jan 2026 at 20:42

Liam, not an expert on your precise situation, my ADT was a different drug. I am sympathetic, ADT isn't great, but from what I read one benefit of relugolix is that normality bounces back much better than the other drugs - one day you may value that!

As someone a bit older than you, with correspondingly older bones and joints, I sometimes suffer with musculoskeletal pain at night (no longer on ADT). For me ibuprofen is much more effective than paracetamol in keeping them at bay for most of the night.

Best of luck, with the ADT and the eventual radio.

User

Posted 21 Jan 2026 at 21:07

Cheers, I might switch to ibuprofen and see how that goes. Thanks.

User

Posted 27 Jan 2026 at 15:29

Hi Liam,

I read this thread with interest, it is everything that I have been suffering from. I am on Prostap, and I haven't had a full night's sleep for the best part of 3 years or more! I have bags under my tired old eyes that would be the envy of any self respecting Zombie. I've stopped fighting it and I quite often end up just get up out of bed to read a book or to write some rubbish for the chat.

It's kind of funny that my PCa journey started off with interrupted sleep, that was the PCa symptom, having to get up to pee several times a night. Now that I am post radical treatments but still on Prostap, I reckon that it is the hot sweats that wakes me up (every 1-2 hours) and then having woken up my body then takes the opportunity to decide that it wants a pee. Of course, then having got up to have a pee, I then spend some time with covers off cooling off, it can be countless minutes before getting back into a slumber before the next hot sweat and the interrupted sleep cycle continues.

As you have seen, there are a few things you can try to help, but I haven't found anything that helps me yet, other than the consumption of a few beers or glasses of red, but the cost of that is the prospect of consequently being wiped out the day after and/or the day after that.

Good luck, if you do find the silver bullet then let us know 😬.

Spongebob

User

Posted 27 Jan 2026 at 17:05

Hi Spongebob,

Thanks for your post. Sorry to hear that your sleep issues have dragged on for so long. However it is reassuring for me to hear that others have exactly the same symptoms - you have described it so well.

The constant cycle of one hour sleep naps, being woken up by a hot sweat, or a cold shiver or the need to pee (or any combination of the three) plus in my case joint pain and bone pain in the legs is very debilitating. I did think of reading during the night but I dont want to wake my wife.

I will have to stay away from home for four weeks of EBRT from mid-February onwards and intend to experiment with reading then as I will be on my own.

The only thing I am clutching at is that the duration of the HT is 6 months - I have the 31st of May highlighted in red on my calendar!

Hopefully someone reading this thread will have a great suggestion that worked for them!

Liam

User

Posted 27 Jan 2026 at 17:27

Yep, forget to mention, I get the foot pain too and that can manifest at night as well.
Enjoy the EBRT, it’s a bit much that you are having to stay away for it. But, if it means that you are handily placed for the hospital then I can see that it would be well worth it. My daily journey time for my EBRT was unpredictable, anything from 40 mins to 1.5 hours, a bit hair raising when being away from a toilet (I had some moments!) and whilst trying to hit the appointment times 😬.

User

Posted 31 Mar 2026 at 18:31

Hi Liam any update on your treatment and your sleepless nights, I have just come across this thread and it’s as if I wrote it myself, I’m on pretty much the same treatment and schedule as you but around 2 months behind you, I suffer from pretty much everything you described

regards

Richard

User

Posted 31 Mar 2026 at 19:05

Hi Richard,

I had my 20 sessions of EBRT after 10 weeks on the HT and it finished two weeks ago. It was in the Northern Ireland Cancer Centre at Belfast City Hospital.

The weekend two-day respite from RT treatment always helped me reset and now two weeks on, I feel like my energy is returning a little bit more every day.

Let me know how things are going with you and what stage you are at. If you have other questions you can ask them here or you can DM me.

User

Posted 31 Mar 2026 at 19:44

Thanks for the reply Liam very informative, I’m also on bicalutamide, the doctor prescribed sleeping tablets for me also, but ruled out tamsulosin currently, sadly the sleeping tablets have not helped much in getting a decent nights sleep , I’ve another month or so before I start radiotherapy, I have an appointment with the consultant radio therapist on Thursday to discuss planning.

User

Posted 04 Apr 2026 at 09:46

Originally Posted by: Online Community Member

Hot Flushes

Hi @Liam64,

I was suffering bad style with hot flushes. In my job, I have to present a lot, sometimes in front of large audiences. I’d find that at the most inopportune moment, a flush would appear, and it would last ages. I’d feel it coming from my cheeks, my head, then down my body, until I was red as a beetroot and dripping with sweat. It got quite embarrassing, as it looked like I was flustered to the untrained eye.

I spoke to my oncologist about it and he prescribed me Cyproterone 100mg - oh wow, did these work! Within about a week, I’d say, the flushes had completely stopped.

The issue with Cyproterone, though, is that you don’t seem to be able to get it even if you’re prescribed it. My GP added it to my repeat prescription list, but nowhere in the area seem to be able to get it. I have to go back to Clatterbridge (cancer centre where I’m being treated) as they seem to be the only ones to be able to stock it. It’s been well worth it, though, as it definitely worked a treat for me.

Good luck!

Matt

User

Posted 04 Apr 2026 at 10:26

Hi Matt,

You seem to have a more extreme case of hot flushes than I have had. Luckily mine only happen in the evening after dinner watching tv, and then all through the night - awake 5 or 6 times.

Thanks for this and so glad to hear that it has made such a difference.

Liam

User

Posted 04 Apr 2026 at 13:32

From NICE

Cyproterone acetate is

a potent anti-androgen and synthetic progestin used to treat androgen-dependent conditions, including prostate cancer, severe acne, hirsutism, and for hypersexuality. It works by blocking androgen receptors and suppressing testosterone production. Common side effects include fatigue, weight gain, and reduced libido, with serious risks including meningioma (brain tumor) and liver toxicity.

User

Posted 04 Apr 2026 at 13:44

I think all of the treatments have some side effect or other, but not all people get them. It didn’t seem to give me any side effects that I wasn’t already experiencing - although I appreciate everyone is different.

I think I surprised my cancer nurse when she asked “any side effects from the chemo (Cabazitaxel)”, and I reeled off nearly every single one of them, except numbness and blood clots!).

User

Posted 04 Apr 2026 at 19:00

On the question of hot flushes, I suffered 'greatly' with hot flushes day&night by virtue of 3yrs Zoladex including 2yrs abiraterone, enzalutimide, prednisolone on trial, with 32 sessions of RT.

I had acupuncture, primarily for the hot flushes but they 'added' relaxing treatment etc. The acupuncture really worked for me, the flushes didn't disappear but were greatly reduced. I know it doesn't work for everyone but I was really impressed.

I had my treatment at Clatterbridge, Wirral and got details of Wirral Holistic Cancer Centre from the Maggies people at Clatterbridge, they need a letter from GP etc, if it still works that way, it was 2017 I think when I went there.

Peter

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