Abiraterone

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Diagnosed in June 23 – Stage 4 with mets, PSA 383
August 23 had 6 Docetaxel sessions and started 3 monthly Triptorelin injections
Started on Abiraterone and steroids in Nov 24
Had a break for 3 months in May 25 and restarted on half the previous dosage as the side effects were bad.
PSA is below 0.03 so it is obviously working but the side effects are still killing me

Constant muscle and joint pain
Occasional sharp 'stabbing' pain in various places
Constant Tiredness – only sleeping for 2 hours then wake up and try to get back to sleep
Muscle weakness
Lack of stamina
Sweating
Brain Fog
Low Haemoglobin(never recovered from chemo) used to be 145g/L now running around 120-124g/L – Iron tablets don't make any difference and I get enough B12 in my diet.
It's not low enough for the consultants to be concerned but it concerns me as I feel the lower reading is one of the causes of me feeling tired all the time

I still walk the dog twice a day – that's all I can manage at the moment. I used to be fit. Training in different martial arts over 50 years and have earned two third dans and a seventh dan over the years but there's no chance in going back to that

Spoke to the consultant yesterday and all they could do was suggest a break from Abiraterone but I would have to stay on the steroids so is it worth it.? For the amount of time I would be off Abiraterone only to know I was going to be going back on in a few months

How do other people on Abiraterone cope?

  • I can't offer much advice, but can very much relate to your feeling. I was on Abiraterone 1000mg for two years, and straggled with fatigue, tiredness and brain fog. I know a few others on the forum had much fewer side effects, but I found it very difficult. Just thinking aloud, if the side effects are too much, can you move to another 2nd generation drug like Darolutamide?

  • Unfortunately not. I was told that I couldn’t change as I’d been on Abiraterone for more than 3 months

    i was on 1000mg originally and it was hell

    500mg is getting the same but they tell me it’s the lowest dose

  • Hi,

    I read your profile and you've really been 'through the mill' I feel for you...

    I've been on Abi since Feb. Yes, the fatigue is a real pain, but the results are brilliant I'm undetectable and in remission after 6 months...long may it last.. So I'm determined to make the 'investment' for a good chance of 'cure' or at least long-term remission. 

    On a brighter note, I complained bitterly about the fatigue and 'negotiated' a reduction in my 'sentence' Just the 2yrs Abi now (18months remaining) and drop the 3rd year of orgyovix. Some consolation. How much longer are you recommended to be on Abi?

    If you are interested, below is an extract from my profile on how I am dealing with the fatigue. Maybe you are not up to this, but you did ask and maybe some ideas/hope there for you.

    Stay strong as you possibly can.. Good Luck

    David

    Fatigue Update July 2026,

    I'm now nearly 4 months on from end of RT. So I conclude, sadly, that the RT effects are not driving the fatigue. It's for sure the orgovyx/aberaterone combo is the driver. (Good news is that even in this heatwave, hot flushes are hardly noticiable, guess I got  lucky, there..) Having read up on this site, many 'blame' the abbi as the driver. Certainly I had much more energy on orgyovix alone. Tentatively looking forward to returning to this for my final (3rd) year of my sentence. I am learning to manage this level of fatigue as the 'new normal' My rules are:-

    • Don't let it rule your life - 'Push through it' whenever possible.
    • Imagine your energy level as  a finite amount of 'gas in the tank'
      • Plan your day around (for me) my 1pm power nap where possible. 
      • Do routine exercise (eg DIY and gardening, walking or cycling) when you have the energy
      • After 30m resistance training I get tired. I leave 2 days recovery before next session
        • Recovery includes routine exercise of course - But LISTEN TO YOUR BODY
    • I am still managing nearly an hour of tennis per week
    • Walking is challenging - I need to sit down for a couple of minutes every 15 minutes. I prefer cycling.
    • Good night's sleep is important. I sleep well apart from (initially) 3-4 toilet visits per night. I continue to take tamsulosin at 5-6pm and stop drinking at 4-5pm (except social occasions where wine and beer features ;-) This has reduced nocturia to 1-2 times per night and lessens fatigue.

    Exercise, Muscle Wastage, Osteoporosis and Weight Gain Side Effects

    It is well established that the best remedy here is exercise, especially resistance training. I have read a great book 'My Exercise Medication For Cancer'. I was already convinced but doubly determined to apply this now. I have found a great physio locally (was lead physio to Canadian Rugby Union team for 8 years) and he is helping me find a way through. The conundrum is finding the balance between the fatigue and the tiring effect of exercise. Key points are:-

    • You must push yourself to 'failure' ie till it hurts with the exercises to build muscle but:- 
      • Don't overdo it - limit to 2-3 times per week for 20-30 mins
      • Rest days are crucial
      • Listen to / be kind to your body
      • It's ok to rest
    • Do what you enjoy, so for me it's to integrate into my weekly schedule:-
      • Tennis
      • Yoga - weekly class and some at home - great for flexibility, mindfulness and positive attitude
      • Cycling - I bought an electric bike at Christmas and am finally allowed to use it (prostate settling in)
      • I'm no fan of walking (Unusual, I know, but I find it boring. But that's ok - not essential.
    • Measure your baseline strength
      • Plank/side plank/ sit ups/lunges/grip strength/sit ups/push ups, etc..
    • You don't need to join a gym if you don't like it / can't access/can't afford it
      • Many of these exercises can be done at home with a minimum of equipment
        • Yoga mat
        • Resistance bands
        • Dumbells
    • Consider creatine supplement to help build muscle, bone indirectly through more exercise and possible cognitive benefits
      • May lead to weight gain, but if muscle not fat, it's good weight.
      • I have switched to sugar-free creatine gummies in June 2026
    • I'm Treating this as a bit of a project / challenge for next 2-3 years

  • Great post David (  )

    Thank you for taking the time to post this. Not only is it useful for people already on this treatment - it’s bloody good information for those of us who may be heading in that direction in the future.

    I wish you well with your own journey.

    Best wishes - Brian.

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  • Excellent post. Thank you Thumbsup

  • Thanks for the information. There are some good points in there
    Unfortunately I'm on Aberitorone until it stops working so no 'light at the end of the tunnel' for me.
    Walking the dog twice a day is all I can manage at the moment but occasionally, if I feel up to it I take one of my motorbikes out for a spin which in itself is good exercise
    I usually need a couple of days rest afterwards(Oh to be young again)
    I'm still managing to work full time. I'm in IT and work from home so that's a help but I have to make myself stand up and move around a bit every hour otherwise my back starts to hurt

  • There is always light at the end of the tunnel, when this medication stops working they will try something else. As time goes by, further treatments come onboard. Have you seen that breakthrough announcement today on skin cancer ? It’s a distinct possibility that this could be adjusted and developed for prostate cancer. Never lose hope. 

    best wishes 

    Gra