Side effects from Acalabrutnib: Does anyone have... - CLL Support

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Side effects from Acalabrutnib

Bill68 profile image
10 Replies

Does anyone have suggestions for dealing with the headache and muscle/joint pain from Acalabrutnib?

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Bill68 profile image
Bill68
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10 Replies
Jm954 profile image
Jm954Administrator

Hi Bill68,Hopefully, both these side effects will be short lived Some people find that coffee helps the headaches which generally stop after the first few weeks. Muscle and joint pain is reported to be helped by Magnesium supplements in the evenings at 375mg a day.

Jackie

Mamayoda profile image
Mamayoda

I just started last week and have had severe headaches- migraines. Last night I almost went to the ER, it hurt so badly. Looking for ideas also.

Bill68 profile image
Bill68 in reply to Mamayoda

So far, coffee helps some, also Excedrin for Migraines, which is Tylenol with caffeine NON aspirin/nsaid. I am taking it before bed and it allows me to usually get through the night.

Zia2 profile image
Zia2

I posted nearly the same time you did. Awful headache that woke me through the night and finally got up at 4 to take500mg of Tylenol and laid back down until 6am and took another and drank very strong coffee. It took the edge off but had a headache all day. Hope the headaches are short lived for both of us.

Catdoe profile image
Catdoe

I’ve been on Alcal for a couple of months now , at first I had terrible migraines, I was advised to have caffeine & food with tablets & it worked almost instantly. I now drink proper coffee in the morning & at night & it is so much better . I took magnesium for muscle aches etc . This definitely gets better over time . Good luck & hope you feel better soon

Pete9876 profile image
Pete9876

When I started the Acalabrutinib I had monster headaches. I was taking one pill in the morning and one in the evening. I almost quit my clinical trial they were so bad. I ended up going with just the one pill in the morning for about 4 weeks and then restarted the second pill at night. No more headaches.

Vizilo profile image
Vizilo

Started on Acalabrutinib 10 weeks ago. Morning headaches for the first few weeks. Not helped by Tylenol. But 1 to 2 instant coffees (high caffeine content) seemed to do the trick. No side effects after the first month...so here’s hoping!!

CBeauty profile image
CBeauty

Drinking a lot of water keeps my headaches away. Basically stay hydrated and keep the flow going.

nvp815 profile image
nvp815

I have been taking Acala since January 2018. I never experienced too much joint pain, but I have had bouts of headaches, especially in the early days. Caffeine in the form of two or three cups of coffee early in the day seem to take the edge off, along with Tylenol. At one point, I went down to just one dose of Acala per day and the headaches completely resolved. After several months, I went back to the twice a day dose and the headaches never returned. I certainly hope this is a temporary issue for you, as this miracle medication has given me back a normal life without exhaustion and enlarged lymph nodes as well as a return to normal hemoglobin and WBC levels. Wishing you all the best,

Nan

Bajabarb profile image
Bajabarb

Bill....I’ve been on Acalabrutinib for a couple of months and I too had terrible headaches at the beginning of the therapy. Tylenol has never worked for me so I drank caffeinated coffee first thing in the morning along with a caffeine pill. If the headaches came back later in the day, I would take a caffeine pill (about 60mg of caffeine) which helped with the headache but still allowed me to sleep at night. The only time I have headaches now are usually in the morning when I wake up and coffee usually takes care of that for the rest of the day. It DOES get better (I haven’t had the muscle aches and pains although when I do, I attribute it to arthritis) and Acalabrutinib has already started changing my blood values in the right direction. So, if you can, try to stick with it as the severe side effects do seem to diminish. Good luck....it’s not easy!

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