Alalabrutinib side effects after 18 months

[BallyB]

I have been on acalabrutinib for 18 months. Initially I had the headaches, muscle and joint pain often associated with the drug. These symptoms dissipated after the first month. Now they seem to have returned, minus the headaches. Has anyone experience a similar situation, and did it resolve itself?

[TimHB]

I had that same experience with Ibrutinib and no, those issues never resolved themselves. After 3 years I was switched to Acalabrutinib and those issues started to improve - but then I developed severe heart irregularities and had to stop. Now I'm on no meds and feel great! But I'm told I have to go back on meds soon.

[cll2013 in reply to TimHB]

If/when you go back on medication , do you know which drug will be prescribed?

[TimHB in reply to cll2013]

Probably not Acalabrutinib. My specialist is considering Venetoclax.

[cll2013 in reply to TimHB]

Straight or in combination? I am inquiring as we are not certain that Acalabrutinib is working for me as the CLL has gotten ahold in my eyes.

[AnneHill in reply to cll2013]

How did you find out it was in your eyes? I keep getting a pain in my left eye. Anne uk

[Walkingtall62]

Hi BallyB. I too am on Acalabrutinib. Just recently I got the aches and pains a little while after taking the doses. More in the evening than morning. However, for a while now I have looked at the ingredients for other medication I take, and did a spreadsheet! I have just managed to get back to one of my pills with very little additives etc. Not sure if talc is a problem, albeit I am sure added in small quantities. Since going back to an original ‘recipe’ (imagine how my pharmacist loves me!) all the aches and pains have gone and I feel so much better. No medical training but just following my gut. All the best

[BallyB]

Just Acalabrutinib.