Update on Acaalabrutinib and Headaches - CLL Support

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Update on Acaalabrutinib and Headaches

Katie-LMHC-Artist profile image

I started Acalabrutinib in December 2022. After being on the drug I was able to switch to Zanibrutinib. During my time on Acalabrutinib I had daily headaches. I was at a point where I would put a 1/4 cup of coffee in the refrigerator and if I woke up at 2:30 in the morning with a bad headache I would get up, drink the small amount of coffee, and then go back to bed. The headaches took a toll on my daily energy and the work I do. I have been on Zanibrutinib for 6 days and have not had a headache or muscle and joint pain. Honestly, I would have stayed on Acalabrutinib but could not manage daily headaches anymore. I feel like a new person on Zanibrutinib! 😂 I wanted to share my journey in case someone else has ongoing headaches and has the opportunity to switch to Zanibrutinib. Be well!!!🌻

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Katie-LMHC-Artist profile image
Katie-LMHC-Artist
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5 Replies
Walkingtall62 profile image
Walkingtall62

congratulations. Zanabrutinib has been ‘mooted’ for me. See what happens at my next visit. Take care

Katie-LMHC-Artist profile image
Katie-LMHC-Artist in reply to Walkingtall62

I hope for the best for you. 18 months of daily headaches were enough for me!!!😩 During that time I switched PCP’s because he discounted my headaches. He said… you’re getting older and maybe you need to cut back on the coffee. Most of us know our bodies and intuitively know when there is an issue. I hate being discounted! Taking a drug holiday from Acalabrutinib (with my oncologists blessing) confirmed it was the drug. What a relief! I was nervous to start Zanabrutinib but so far no headaches, just a bit of fatigue. Take care and I wish you well on your journey!!!💜

Rexi52 profile image
Rexi52

Yes, my experience after 19months with Acalabrutinib is headaches and nausea which is managed by coffee and early 5am porridge for breakfast!

Good news is though it’s slowly improving my bloods and apart from the early morning ritual I’m feeling pretty good!

Katie-LMHC-Artist profile image
Katie-LMHC-Artist in reply to Rexi52

Thanks for sharing. 18 months of headaches were enough for me to switch. I am grateful that I had the opportunity to switch! Stay well! 🦋

CoachVera55 profile image
CoachVera55

Good to hear, Congrats 🥳 #QualityLife🙏🏾

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