Ibrutnib versus acalabrutnib: I was on ibrutnib... - CLL Support

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Ibrutnib versus acalabrutnib

Fwanni profile image
7 Replies

I was on ibrutnib over 3 years, great blood results. The only issue was severe bone, joint pain esp in my right hand, feet. Off it 4 months, with low joint pain. Now prescribed acalabrutnib but all reports say one gets very bad headaches. I'm undecided on starting acalabr..maybe yhe 'devil you know' (ibrutnib) is a better option? Thoughts, anyone. Best wishes

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Fwanni profile image
Fwanni
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7 Replies
CycleWonder profile image
CycleWonder

Many people report that having caffeine in some form in the morning relieves the headaches effectively.

AussieNeil profile image
AussieNeilAdministrator in reply to CycleWonder

Caffeine and if needed, acetaminophen/paracetamol, also known as Tylenol, Panadol, APAP. Importantly the headaches, if you actually get them, only tend to last a few weeks.

Neil

country76 profile image
country76

I switched to Alacabrutinib from Ibrutinib and have been fine. The headaches are few and far between never even had to use a tylenol, they were so faint and were gone quickly. I haven't had any in a long time.

I recently stopped Alacabrutinib because of some dental work and just started Sunday, a little worried what would happen. Only a couple of small bruises on my forearm.

SLLJOHN profile image
SLLJOHN

I switched from Ib to Alcalabrutinib nearly 2 years ago and haven’t looked back. Much reduced joint pain and itchiness went away completely.

Cllsller profile image
Cllsller

I did get severe headaches so my doctor changed my dosage . Th headaches are not as frequent now. Give it a try and perhaps try taking Tylenol with caffeine which really helps the pain. Best of luck.

Unglorious profile image
Unglorious

As they say everyone is different. In my case when I was on Ibrutinib I experience roving pain in my joints, which I eased when applying cold compress to the different areas, experiencing this very often but did not have to take Tylenol to ease the pain, I could handle the roving pain without Tylenol. Now, I am on Acalabrutinib, I never experienced the headaches, but I did experience Myalga in my left shoulder/arm/neck area, this occured when I took the second daily dose of Acalabrutinib. Pain was severe, had to take two Tylenol extra strength or Tylenol3 (prescriptioon). I finally sought the help of a physiotherapist which showed how to do stretching exercises which seems to have helped. I do this twice a day, most beneficial after a warm shower. I am also seeking the advice of my oncologist to see if I can reduce Acalabrutinib to once a day. Others on this site have advise they are on a reduced dosage of Acalabrutinib and their numbers are fine. I am due for a blood test Nov. 8th and then the in office with the oncologist. Will update you if you wish. Good luck.

Sushibruno profile image
Sushibruno in reply to Unglorious

Good question.

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