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User
Posted 23 Sep 2023 at 08:16

Hello there 

I had my last injection of Decapeptyl in feb this year after 3 years of injections

I wake up everyday with chronic joint and muscle pain, wondering if anyone else has had this and is it a side effect

Thanks everyone 

User
Posted 23 Sep 2023 at 09:02

Hi WobblyJohn,

I know how you feel, did you have this whilst on the drug or did it start afterwards?

I’ve been on Prostap3 for 15 months now and it’s the one side effect I haven’t managed to find a solution for. I am exercising, going to the gym, swimming, cycling and walking. A short while ago I could hardly get out of a chair but I’ve been working hard to build up my muscles…it is getting better but it’s tough going and I still have real stiffness in my knees, shoulders and elbows.

Have you seen a physiotherapist? That’s my next step and I might also try acupuncture.

as I have another 21 months of this poison, I’m concerned that I might be immobile by the end of treatment if it gets any worse.

Derek

User
Posted 23 Sep 2023 at 09:25

Hi there

I've been off the drug now for 6 months and its not got any better.. Im quite active but struggling to do much at the moment, will probably go to gp for some advise, wishing yoi the best going forward

User
Posted 23 Sep 2023 at 11:16

I don't know your injection dose (Decapeptyl comes in 4 week, 12 week, and 24 week doses). So you're on treatment until that period expires after the last injection, i.e. when your next injection would have been due if you hadn't stopped.

From that point, you start the recovery from hormone therapy. Nothing happens for many months, because the drug effect continues. Somewhere around 9-12 months, your Testosterone should return, and it usually does this relatively quickly, over a couple of months. It can be useful to have Testosterone level added to your PSA tests while you are waiting for your Testosterone to return to its stable level. If you still have your prostate, you expect your PSA to rise a bit when this happens, so it's useful to know when it happens. It's also useful to know for the purpose of understanding your recovery and side effects.

User
Posted 23 Sep 2023 at 11:25

Thank you

I was on Decapeptyl for 3 years still have prostate... 

Been off injection for 6 months now but the joint pain is bad will speak to oncologist soon when i get psa test...

Thank you 

John 

User
Posted 23 Sep 2023 at 11:44

I was on zoladex three monthly. My last injection was Feb 2020. By November I had still not recovered much testosterone, on Christmas day I had my first erection and everything has been fine since. So yes it takes a long while to recover from HT, but the recovery is quite abrupt.

Dave

User
Posted 23 Sep 2023 at 12:34

Dave

thats brilliant news! I’m envious; I’m now stage 4 and on Decapeptyl and enzalutamide. Hope you have shaken it off forever! Neil

User
Posted 23 Sep 2023 at 13:07

Dave,

that’s encouraging….I hate wishing my life away but I can’t wait until I am at the end of this ‘treatment’. I’m not giving up though and will continue to do everything I can to keep my QOL at an acceptable level. Just about to have a new kitchen fitted(not by me!) and been moving some cupboards into the garage. I even struggle to lift an 800mm empty wall carcass😟

Derek

User
Posted 23 Sep 2023 at 13:57

Great news your recovering 

It just takes time to get back to some sort of normality... When you came off it did you get joint and muscle pain

 
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