Acalabrutinib - effects of temporarily not taking it

[flyhigher]

Thought I'd share my experience of temporarily stopping Acalabrutinib.

Upon advice, I stopped it for a week before a minor op. I usually walk 4 to 6 miles a day, say four days a week. My consultant warned me there could be 'withdrawal effects' so I was forewarned when on the sixth day of the stoppage, and on only my second walk of the week, I could hardly complete my 'standard' walk 6 miles - really felt bad (queasy, more-then-fatigued, shattered-to-bits) and had to prop up a farm gate for ten minutes before struggling back home. Felt fairly grim the rest of the day before things improved overnight.

Fast forward two weeks. After ten days back on the Acalabrutinib, I deliberately repeated and completed (yesterday) exactly the pattern of walks that had caused grief earlier. No problems! Sailed through! Relief! Positively bounced back home!

I can only put down that bad walk to coming off Acalabrutinib. So, if you do have to stop Acalabrutinib for any reason, be aware of the knackering effect that might kick in but take comfort that it'll go away once Acalabrutinib restarted. That was my experience anyway, for what it's worth.

[Zia2]

Thanks for the info!

[onu1tadi2]

Seems we are all different. I went off ibrutinib a day before surgery but then stayed off it for 7 months, and felt no side effects or problems from going off it. In fact I stayed in remission and then started acalabrutinib which I have been on now for 4 months, with none of the cramps and pains I had when I first started Ibrutinib which i was on for 1 1/2 years (at 2/3 the standard dose). Also I developed A fib on it, but it went away after I took a holiday from the drug and has not returned on acalabrutinib (Calquence) of which I am taking one half of the standard dose. I am 76 years old and am still working.