Abiraterone side effects

Hello HollyS 

Welcome to the forum and thanks for your post. I can't answer your question as I am on the HT/RT route myself but there are plenty of forum members on Abriaterone and by me replying your post will return to the top of the list and should get more views.

I hope you get some answers that help in you dad's case.

Best wishes - Brian.

Thank you Brian, much appreciated!

Hi HollyS,

Welcome to the forum. My partner is on Abiraterone. He has experienced problems with his neck and two of his fingers. He has calcification, on a neck/spine bone "osteophyte bar" (like bone spurs) which have previously (slightly) effected the nerve, this has now been exacerbated by the use of Abiraterone, which he has been advised can give a side effect of inflaming the nerves on bony growth, same with the two fingers. He finds he also has pins and needles and numbness up his left arm which results in weakness when using this arm. At this point it is a side effect that he can live with. Tiredness is also a side effect that he manages with exercise, steroids and just taking a nap if he's run out of energy.

I don't know if this is of any help to you. Perhaps, (just guessing) your father has osteoarthritis in his shoulders/arms and Abiraterone has inflamed the situation? My partner has been told that this (nerve inflamation) is a side effect of Abiraterone and it will not go away, somedays it's better, but it  seems to now be part of his daily life.

Best wishes to you both and I hope you get to resolve this problem.

L

Hello, 

Thanks so much for coming back to me.  I wondered if there was some sort of nerve issue. My dad is 80 so chances are he has arthritis in most of his joints so it sounds like it could be this. 

I'll do a bit more research and follow up with the consultant again once it's been confirmed that it's not polymyalgia, which was also highlighted as a possibility given his symptoms. 

It's like putting together all the different parts of a jigsaw!

Wising you and your partner all the best. 

Many thanks

Carole

Hi, yes it will be interesting to see what the follow up is with the polymyalgia, please let me know as it does sound likely as well. I was wondering if your dad has steroids with the Abiraterone and how much does he take, do you know?

Lorraine

He takes 1 x 5mg of the steriod a day.  The consultant said he doesn't need to take it if he's not taking the abiraterone now but didn't want to reduce the amount until we'd heard about the polymyalgia as the treatment for that is steroids. 

He has a GP appointment today so should find out if he has polymyalgia or not.

The reason I'm asking about the steroids is that my partner takes 5mg a day.(because as you say the steroids are needed with the Abiraterone) He now has a different consultant that says it should be 10mg as standard to combat the side effects. My OH is reluctant to up the amount as its going to be a lifetime thing, we feel it's better to keep them down because of the side effects of steroids, so he's carrying on with 5mg. What to do... Steroid use is a bit of an ongoing investigation for me at the moment.

Do let us know how you get on today , I hope it goes well for your dad.

L

I think 10mg might be the usual dose.  When I spoke to my dad's oncologist last week he thought my dad was on 10mg (2 x 5mg a day)....but when I spoke to my dad he said it was 1 x 5mg. 

So not sure if it was reduced at some point or not.  I was trying not to get too involved as didn't want to affect my dads' independence but over the last few months realised I needed to be on top of everything.   

I did a bit of research and I think anything under 40mg a day is a low dose....although, of course, it's a big consideration if it's going to be lifetime thing.  

My dad's GP is putting him on a 3-week course of higher-dose steroids to see if that impacts the arm issue in case it is polymyalgia. We still don't have a conclusive answer yet! But hopefully he'll get some respite!

Wishing you all the best. 

Gosh yes that's really interesting. 10mg does seem to be the norm. When my partner does take 10mg, occasionally when he's completely burnt out he goes completely the other way and is jittery and twitching all night.  Also my daughter is a vet and she scoffs at the 5mg as apparently it's the amount they give to small animals. So maybe I'm overthinking the dosage and effects.

Thank you for getting back with this info and please let me know the results of the three weeks of steroids with the arms. 

All the Best

Lx

Hi All and not sure this is the right thread. Been on Abiraterone for 4 months with 5mg pred and PSA reduced initially to 4.8 but 10 weeks later its gone up to 8.5. Just wondered if anyone has the experience of increasing Pred to 10mg would help or if Abiraterone dosage can be increased above 1000mg daily. Many thanks