Hi everyone, my husband’s Oncologist has prescribed Abiraterone and he is picking up the prescription today.
We went through the possible side effects, and it’s rather daunting, but his oncologist said in her opinion it will be a good addition to the Prostap he’s been on for five weeks, he’s Gleason 9 (4+5) (T3b currently N0 M0 but awaiting a PSMA Pet scan to confirm this is the case). PSA at diagnosis in January was 26 which fell to eight in the first three weeks of taking prostap.
We understand there is a strict timetable of taking the drug and it must be on an empty stomach, and the steroid needs to be taken with food a minimum of an hour later, and it’s best to take the steroid earlier in the day so it has less effect on sleep. He hasn’t had any side effects from the Prostap so far, aside from a fast drop in Testosterone level to 0.6 and the associated loss of libido and ED, which he was prepared for.
Does anyone have any advice on taking Abiraterone or any tips on dealing with side effects? It’s always good to hear peoples real life experience.
thanks
S
I started off on Abiraterone 1000mg (and steroids) with Olaparib
The side effects were pretty harsh. I felt like an extra from 'The Walking Dead'
Firstly I'm diabetic and the steroids made my blood sugar, which has been well controlled for decades, go through the roof
It took my GP 4 months to finally prescribe a separate fast acting insulin so I could get some control back
I always take my steroids with breakfast then two hours later I take the Abiraterone.
If you take the steroids later it could affect your sleep and I sleep badly enough already
I had a break from the Abiraterone and Olaparib as the side effects were wiping me out.
After a few months I restarted Abiraterone but didn't restart Olaparib. They reduced the daily dose from 1000mg to 500mg so the side effects are still there but not as bad.
My PSA has been below 0.03 since Feb 2025 so it's obviously doing something good
I still managed to get some exercise walking the dog twice a day. Some days are harder than others but the dog still needs to be walked
Good Luck with the treatment
Thanks for the reply.
Thats interesting that you take the steroid first with breakfast, perhaps that might be an option.
I’m sorry that you found the side effects so debilitating, but as you mention, the fact that you are diabetic may have been a contributing factor.
My husband is otherwise fit and healthy, exercises regularly, and has no other health issues aside from the cancer. He’s determined to keep as fit as he can. He’s a healthy weight and wants to try to maintain it, he’s even given up chocolate and donuts that he’d occasional enjoy.
Your PSA level is excellent, long may it remain so.
we’ll just have to see how he gets on. QOL is important to him.
Best wishes going forward.
S
I took Abiraterone first thing in the morning, with Omeprazole and Adcal-D3, and an hour later the steroids with food.
The Omeprazole is needed to protect the stomach from the steroids and Adcal-D3 to protect the bones due to the HT duration (I also took weekly alendronic acid for that reason)
The fatigue of Abiraterone is significant, I think the best advice is not to fight it and just have a nap when you feel too tired. I had to take several naps a day when I was on it.
Staying fit is important and helps, especially resistance/weight training - lifting heavy.
This medication does impact QoL significantly, or at least did for me, but it's very effective and took my PSA from 42 to 0.1
Hope this helps
G
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