imbrutinib side effects : Taking maintenance... - CLL Support

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imbrutinib side effects

RVcll profile image
12 Replies

Taking maintenance dose about 5 years. Leg pain in summer the last 4 years I just realized is due to the meds. Any advice on managing the misery? I take 2(140) pills with dinner and wake up about nine hrs later with terrible burning ache. Maybe I’ll try taking it with lunch and drink more liquids after the dose?? Thx

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RVcll profile image
RVcll
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12 Replies
SofiaDeo profile image
SofiaDeo

Playing around with the time of day to take it, and drinking more, should be OK to try. Unless you have a lot of other meds you also have to take, when you are planning to take the ibrutinib. I hope it helps!

olyocl profile image
olyocl

I have been on Ibrutinib for 2 years and take mine after breakfast with a large glass of water.

Northland profile image
Northland

I have been on Ibrutinib for 29 months. For the first 2 years I took my 3 pills in the morning after breakfast but switched to 9pm a few months ago to good effect. I had occasional leg, feet and hand cramps but found magnesium supplements help. I use to take green tea extract and curcumin but found they weren't helpful and caused discomfort. Lots of walking and hiking make me feel good and minimize cramping.

michaeledward profile image
michaeledward in reply to Northland

Reading your post mentioning leg, feet and hand cramps reminded me that up until about 3 - 4 years ago (I've been taking Ibrutinib since 2014), I used to get severe cramps in my hands/fingers every so often. I never connected it with the Ibrutinib and never was treated for the cramps, but it seems to me that it stopped around the same time I started taking vitamin B12 daily for an uncomfortable feeling in my foot/toes. The B12 solved my foot problem, but I'm now thinking that it may have also solved my hand/fingers cramps problem.

Northland profile image
Northland in reply to michaeledward

Thanks for the comment. I will give B12 a try.

W00dfin profile image
W00dfin

My Ibrutinib leg pain not daily and was primarily in my knees with 24-48 hour episodes. I found some relief from ice packs using freezable pads we found online. The directions say keep them on for 30 minutes per session. Especially helpful at bedtime.

Best wishes!

julieS3 profile image
julieS3

I have been on ibrutinib for 2+ years 3 tabs. I take it at lunch time and try to drink 6-8 cups of water daily which is recommended. I have had back muscle spasms/aches come and go sometimes very painful. I found a heating pad to help greatly and I’ve also used Voltaran cream which is over the counter for muscle aches as well as Tylenol. The cream works very well but has ibuprofen so check with your doctor. Take care

Northland profile image
Northland in reply to julieS3

I asked the Pharmacist who dispenses my ibrutinib about Voltaren and she said because it is applied topically the ibuprofen in it isn't a problem the way pills are when digested.

julieS3 profile image
julieS3 in reply to Northland

thank you Mark!! You make me feel allot better about using it.

BeckyLUSA profile image
BeckyLUSA

Just a question. Your leg pains are just in the summer?

RVcll profile image
RVcll in reply to BeckyLUSA

achy most of year but terrible burning and ache in August the last few years since taking med. thx

BeckyLUSA profile image
BeckyLUSA

Wow, very strange. I take 140 mg of Ibrutinib and it works for me. You might ask about that.

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