Joint Pain with Acalabrutinib?: I am... - CLL Support

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Joint Pain with Acalabrutinib?

BallyB profile image
9 Replies

I am experiencing a great deal of pain in both wrists and have been on Acalabrutinib for five months, has anyone else experienced joint pain with this medication?

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BallyB profile image
BallyB
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9 Replies
skykomish profile image
skykomish

Yes, I am on acalabrutinib and I have joint pain in my hips. It was worse at first, especially in the morning. Now after nine months on drug, it has mostly resolved. My CLL doctor suggested taking an over-the-counter pain reliever, but I rarely need to. Your level of pain sounds worse than mind was. I'm very sorry to hear that you are having a hard time, and I hope you can get some relief.

Do you get swelling and redness? I tend to see gout, or at least I think its gout.

BallyB profile image
BallyB in reply to MovingForward4423

No swelling, definitely not gout in my case.

KneeHurts profile image
KneeHurts

I am on ibrutinib for Waldenstrom's disease. After a couple of months I started to experience pretty servere knee pain. Now, after about a month, the pain is mostly gone.

My understanding is that joint pain is fairly common but the doctors don't understand why it happens.

I found that taking two 200 mg ibuprofen at the same time provided some relief for a few hours. It took about an hour for the relief to happen.

After consulting with my Waldenstrom's doctor I am going to have ortho consult to rule out an actual ortho problem).

kimiD profile image
kimiD in reply to KneeHurts

Have you consulted your physician about taking the ibuprofen while on ibrutinib? I was told not to take the combination due to the potential for bleeding.

KneeHurts profile image
KneeHurts in reply to kimiD

Thanks for the heads-up.

Yes, in fact it was my physician that suggested I try naproxen (Aleve) and also said that ibuprofen would be okay to try as well. I think naproxen is preferred because it doesn't need to be taken as frequently.

Perhaps the risks to CLL patients are different than the risks to WM patients.

Newdawn profile image
NewdawnAdministrator in reply to KneeHurts

I was forbidden from taking any anti-inflammatories (even ibuprofen) whilst on Ibrutinib. It’s the anti-coagulant properties of ibrutinib that’s the risk apparently. It’s ultimately why I ended up coming off ibrutinib because my joints were so bad and blood tests were showing muscular damage. Some specialists seem to accept the combination but 4 separate Consultants forbade me and one was a rheumatologist.

cllsociety.org/2017/09/thin...

Newdawn

LynnB1947 profile image
LynnB1947

I am on ibrutinib (the predecessor to acalabrutinib), & I have joint pain from time to time. It seems to be related to my level of physical activity. About 2 weeks ago I fell with my left wrist & hand taking the shock of the fall. About 5 days later, the pain in my left wrist was quite intense. It lasted about 3 days and then was gone.

I recall several years ago having severe pain in my left knee & thinking I might have to have a knee replacement but 3 days later, it was back to normal. BTW, almost 7 years on ibrutinib here. Wishing you the best!

LynnB

Justasheet1 profile image
Justasheet1

Lynn,

Good to see you are doing well my friend. Your response made me think. Had swelling in the last two fingers of my left hand for 3 days and then it magically switched sides to my right side one day after wrenching on my vehicle. I’m on ibrutinib too and didn’t connect the dots.

Jeff

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