Muscle weakness.: Has anyone on ibrutinib... - CLL Support

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Muscle weakness.

tola2222 profile image
7 Replies

Has anyone on ibrutinib experienced weakness in the legs?

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tola2222
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7 Replies

ABSOLUTELY and very bad muscle aches.

Paula

tola2222 profile image
tola2222 in reply to

Thanks, Paul, do you take anything for it?

in reply to tola2222

I take ibuprofen I am also on pain medicine for severe spinal issues. Nothing really takes it away for me. My hemo/oncologist is considering lower the dose. She wants to give it a little longer and if pain level does not improve, she said she would lower the dose and that is supposed to help with side effects. I cannot wait 😞

Take care,

Paula

haposwald profile image
haposwald

Yes joint aches, cramping and muscle pain but I’m still kicking CLL’s butt and plan to continue to do so !! I take a bunch of hot showers when bad and a small amount of Capsaicin to warm up muscles etc! So you are not alone and please keep kickn CLL’ butt good luck!

morepork profile image
morepork

Hi

I've developed muscle pain and weakness in arms and legs as well as joint pains since being on Ibrutinib, though this wasn't a problem when first on the drug. I wondered if this was to do with muscle enzymes?

Scary incident today when I was at the lab having a blood draw and I found the various entry doors very heavy and hard to push. Never been a problem before.

( Now holding my breath for the blood test results !)

tola2222 profile image
tola2222 in reply to morepork

Thanks for posting, morepork. My experience is similar, and I'm wondering if ibrutinib, having wiped out most of the CLL cells, has now turned to work on muscle nerves.

Jemorgen profile image
Jemorgen

Thanks for posting Tola. While I don’t know about ibrutinib attacking our muscles directly I wonder if there’s an explanation for what the mechanism might be here?

Heather 🇨🇦

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