Abiraterone side effects

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Hello,

I wondered if anyone has had any experience taking abiraterone, specifically the range of side effects.

My dad started taking this a year ago. He was fine until spring this year when he started feeling very tired. It was manageable though.

He has had a tough summer as the range of side effects has intensified, extreme fatigue, muscle aches and pain, loss of appetite etc. To the point, he couldn't really leave the house for a few months.

His prostate cancer is well-controlled and he has had various scans (bone, dexa, CT) to check if there is anything else going on and is is all clear.

He was advised to stop taking the abiraterone at the end of August and most of his symptoms have slowly improved.

However, he is having major issues with pain/weakness in his arms. So much so that he can't lift them and just getting something out of a cupboard is difficult. He has no strength in them and is finding it extremely debilitating. He pretty much can't use his arms at all.

We are not really getting any answers from the medical profession on whether this is a normal side effect of abiraterone and will eventually go away or whether there could be something else going on. He is getting a blood test for polymyalgia this week to see if he has that.

I wondered if anyone else had had a similar experience with abiraterone and could offer any insights. Or know of any medical conditions that might mean his arms don't work?! It's very strange, he'll have an occasional day where they feel much better and then they are back to being bad again for another week or two.

Thank you

Alwayshope over 1 year ago in reply to Will4

Hi Will4.

This question is similar to one we have had on another thread. I would check back with the medical team fairly quickly as I think the rise in PSA can be tackled in a couple of ways, either by changing the steroid or by going on to another antiandrogen but the option to change to another antiandrogen is time limited. I doubt that increasing the dose of Abiraterone would have an effect and could be contraindicated.

BW over 1 year ago in reply to Will4

Hi Will4

I’m not sure that changing the steroid makes a lot of difference, my OH had 5mg,10mg and now 5mg alternate days to try combat side effects, getting a good balance of drugs v’s side effects seems tricky atm . These changes haven’t effected his PSA though just energy levels. he’s always had 1000mg Abiraterone and there has never been any suggestion of changing the dose. It sounds like you may need to change over to something else maybe as your body could now be becoming resistant to it , My OH is having problems with his liver readings and his ALT is very high (89) Bilirubin is higher than normal since going down to alternate 5mg.steroids so that’s indicating a possible problem looming, possibly with Abiraterone. Hes just having another blood test to see if it’s a blip ( hopefully). It’s such a strong drug and I don’t think it suits everyone. Our next step would be a change over to Enzalutamide if it doesn’t settle. Are you having any liver problems on your blood tests?
Best wishes L

Alwayshope over 1 year ago in reply to BW

Hi BarryW.

I didn't explain very well, by changing steroid I meant switching from Prednisone to Dexamethasone. There is some evidence that this approach can reduce the PSA. I have attached just one article which just gives a headline information.

https://karger.com/uin/article-abstract/105/5-6/380/302485/Clinical-Experience-of-Steroid-Switch-from?redirectedFrom=fulltext

I agree with you that it is important to have regular liver checks and have attached an article on liver toxicity whilst on Abiraterone. It is also important to make sure that the medical team are aware of all medications and supplements or health products that you take as they can interfere with the way that the drug is metabolised.

https://www.ncbi.nlm.nih.gov/books/NBK548136/

I hope your husband soon gets sorted BarryW.

BW over 1 year ago in reply to Alwayshope

Hi Alwayshope,

Thank you for the info, I see what you mean about type, I was thinking amount. Also thank you for the link on liver toxicity I’ll have a read now . I have been reading quite a lot about Abiraterone lately and how It can cause problems in the liver in a few people, We are hopeful of just a blip with the ALT because it’s such a good drug to stay on. Blood test Thursday so hopefully back to normal. I’m also inclined to be a big worrier, like we all are with Pc. Think OH will be pleased to stop being force fed kale and spinage with anything he eats as well if it goes back down
Lx

Alwayshope over 1 year ago in reply to BW

Hopefully it is just ALI but all the best for Thursday.

I think my husband is going pink with all the beetroot I feed him. Good for all sorts of things, especially potassium. When I first started giving it to him regularly he came rushing out of the loo thinking he had blood in his urine and poo. What goes in must come out.

Millibob over 1 year ago in reply to Alwayshope

Still on topic

We have Beetroot risotto with a little bit of cheese once every few weeks - it's so tasty and one of my go to meals.

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Alwayshope over 1 year ago in reply to Millibob

Sounds delicious Brian. I was wondering what to do for lunch today - problem solved.

BW over 1 year ago in reply to Alwayshope

Hi A

We really do need to do a PC cook book with a pull out section on 100 things to do with Kale and other power plants! I do have to laugh though as rushing to the loo is a big event in our house too and my cooking doesn't help!