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
Hi folks. I’m 88 male and coping with a return of cancer - where my prostate was before a prostatectomiy 17 years ago. I was prescribed Abiraterone (1000mg) and steroids (5mg) about 18;months ago - my memory is shot so I can’t be accurate. My PSA was 22 but after months of the tabs and quarterly injections of Prostap 3 DCS it’s now down to 6. The Abiraterone has been reduced to 500mg. I was advised to take it together with the steroid first thing an hour before breakfast - planned for about six o’clock but sometimes I sleep in and breakfast is delayed! I take the steroid - as advised about 5pm before my evening meal at about sixpm. The side effects have varied from crashing out back to bed for three to four hours - fortunately occasionally but without prior warning - to fatigue and brain fog, confusion and low mood verging on depression. My wife taught me some exercises and encouraged walking in the house. This was working well till a fortnight ago when I had the latest injection. The side effects crashed me out and I am just getting back to exercise and walking. Does anyone have any tips to combat the side effects? Are there meds available to help? I’d be grateful for any suggestions.
Sorry to hear you are struggling with the side effects, but good that your PSA has dropped. Please also remember that at the grand age of 88 tiredness is very common, and you won’t have the same energy levels as you did when you were younger. Eat well, plenty of healthy vegetables and protein might help you. You need to talk to your doctor or oncologist at your next appointment, they may be able to adjust your drugs or suggest taking medication at different times of the day. They are the experts and hopefully they can help you.
Hi
I can see that there are many specific responses - and as I am slightly different I won't go into too much...
I am on Darolutamide tablets together with a Zoladex implant as part of Triplet Therapy (chemo as well!) I also take Prednisolone as a steroid twice a day, once in the morning and once late afternoon (before 5.00pm!!), but this is associated with the chemo and I now have a two month tapering down plan to come off it.
I have found it really handy to set up a series of alarms on my iPhone for when to take each tablet (and during chemo there were plenty more to manage as well). Each alarm can be edited to say what needs to be taken at each alarm -so you can always check which one to take. You could even add in if it needs food or not?
Hope this might be of assistance - it has certainly helped me, although the alarms are getting a bit tedious now 8 months on!
I concur with views about exercise and upping protein intake - but you need to get in the right mindset to do this, and want to do it. Those long walks can be draining but once the legs are moving it gets better. I also plan if I can a route that has a bench somewhere (and I carry a small foldable pad to sit on along with a drink).
All the very best
KrisPy
I have similar diagnosis and just completely my RT sessions- HT for next 18 months +. I take the Abiraterone around 8am on empty stomach, have some breakfast around 9, and take the prednisolone/steroid lunchtime. I have a short nap (30-45mins) after which I get on with the rest of the day, usually without fatigue. I wasn’t aware of any instructions to take the steroid 1 hour after the Abiraterone but it may be the timing - I.e. gap between the morning Abiraterone and follow up prednisolone may be what you need to work out what works best. Once you have that rhythm sorted it may help.
Hi there,
I have been on Abiraterone + prednisolone steroid since 28/4/2020. Yes there are a few side effects that can have a profound influence on how the individual may feel or react. I have been fortunate as Abiraterone has been a great treatment for me regardless of the side effects I deal with. As I have said on many occasions over the years on this forum, any medication prescribed is not a one size fits all treatment. We are all different & individual but have a common denominator in Prostate Cancer but any medication we may take might not suit everyone. Fortunately as cancer research moves forward & more and more treatments are found we can only hope in the fullness of time, a complete cure can be found for this heinous disease.
Like my consultant told me " there is always a Plan B "
Take care & I wish you and your husband all the best.
Tom ( HarleyD )
Good idea re alarms, am managing all the appointments on the iPhone. It’s so easy to forget stuff. After years and years of hardly going anywhere near a doctor or hospital there seems to be an appointment for something every week !
Thanks for the reply, and yes, everyone is different. He is physically fit and use to plenty of exercise, regularly walking for one and a half hours day. We’re hoping that his fitness level can be maintained as much as possible. He’s been on prostap for six weeks and no tiredness or fatigue or hot flashes so far. His testosterone is now 0.6 so there are side effects with that !
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