ADT - Sleep Issues

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

Liam

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.

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.

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