Muscle pain: Is anyone experiencing muscle pains... - CLL Support

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Muscle pain

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Is anyone experiencing muscle pains, particularly leg pain, from taking IMBRUVICA

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13 Replies
sllincolorado profile image
sllincolorado

Busy work day so this will be quick but just wanted you to know that "yes" I had incredible pain from imbruvica. This is a known side effect. Not everyone has this issue. Some people have it for a few weeks and it goes away. Mine did not go away. I could not walk. I was crawling. Depending on your situation and your country, you may want to ask your doctor about switching to calquence/acalabrutinib. Same type of drug but usually fewer side effect.

MN1999 profile image
MN1999 in reply to sllincolorado

Yep, occasional roving muscle and/or joint pain which has been painful, but not unbearable. Usually subsides after a few days.

in reply to sllincolorado

Thanks,I am an avid cyclist and I originally thought it might be tendinitis but after rest and PT it was not getting any better. I too had days I could only walk a few steps. Your input was very helpful.

Justasheet1 profile image
Justasheet1

Smith123456 is a grouch but a nice one. 😂

mrsjsmith profile image
mrsjsmith in reply to Justasheet1

I don’t disagree but I wouldn’t want to deter any new people from posting.

Colette

Smith123456 profile image
Smith123456 in reply to Justasheet1

who says i'm a grouch-lol

morepork profile image
morepork

Yes, still can only walk briskly 10 mins before the muscle pains get intense enough to bring me to a hobble. Arm pain as well when on laptop too long. Just about manageable on reduced dose of Ibrutinb (280 mg).

Tomich1949 profile image
Tomich1949

I have been on Ibrutinib for 4 years and have a lot of leg pain . Still thankful for the drug though.

ANA4 profile image
ANA4

I have a severe muscle cramp but still very much thankful for the drug though

winterwild profile image
winterwild

When I was on Ibrutinib I suffered shocking cramps. Magnesium worked for me, either spray on affected limbs or good quality tablet.

Redlion profile image
Redlion

This roving arthralgia is unfortunately quite a common side effect of Ibrutinib treatment which can affect any joints and often zeros in on those that are already weak or suffering. For some it will resolve either fully or partially as your system acclimatises to the medication, however for others it is both persistent and disabling. Reduce dosing is a potential option although arguably not advisable in the early stages of treatment when the Ibrutinib is doing the heavy lifting in bringing down lymphocyte counts. Another option would be a switch to an alternative medication, depending on what is available to you where you are, of which there are now a number, although by no means unlimited.So moving to an alternative will reduce your options for the future should you find it necessary to switch again.

In my case I tolerated the side effects until my lymphocytes came into normal range at which time I made the decision to reduce dose, initially to two thirds dose which made very little difference, and then to one third dose which did make a big difference (I would judge a 80% reduction in arthralgia issues). Both reductions had no negative effects on lymphocyte counts and in fact after 9 months they continue to edge down.

My consultant was extremely reluctant to sanction any dose reduction until I was able to prove that the reduced dose would still be able to control the leukemia, and then he had no argument.

Just to point out that we are all different and what has worked for me may not work for you or indeed anyone else.

Good luck.

BallyB profile image
BallyB

I am on acalabrutinib, a similar drug, and have stiff joints, some leg cramps and muscle aches, some probably due to the drug and the rest due to the passage of time.

Cali69 profile image
Cali69

Yes. I have found that the pain would start to subside about 8 hours or so after taking. So I switched to taking it in the evening and haven’t had much issue with pain and stiffness.

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