Muscle cramps and bone aches: Hi ladies and... - CLL Support

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Muscle cramps and bone aches

Informationseeke profile image
8 Replies

Hi ladies and gents.

I'm having lot of the above problems. Taking imbrutinib 3 tabs per day. What is everyone else taking or using to try and combat this problem. Hav to find something as stops me in my tracks and loose my mobility. Cheers friends.

Wishing you all the best day u can have.

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Informationseeke profile image
Informationseeke
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8 Replies
TimHB profile image
TimHB

Hang in there - the first few months were the worst for me. I'm now 10 months and find everything to be much more manageable. I tried everything for the pain - lots of Tylenol and TylenolPM and Ambien for sleep but on the advice of my CLL specialist, my hem-onc and my GP, I used CBD oil (pure, no THC) readily available in grocery stores in L.A. 3 to 5 drops under the tongue worked wonders. It was especially effective for helping me sleep at night when the pain would flare up the most. I'm glad to report I no longer need anything other than the occasional Tylenol.

Informationseeke profile image
Informationseeke in reply toTimHB

Thanks for that. Will look up on web. Glad to hear your much better.

bkoffman profile image
bkoffmanCLL CURE Hero

Usually gets better after a few months. Occasional low dose steroids can help the most severe cases. I used Tylenol ands Magnesium- helped a little. Stay strong. Brian

Informationseeke profile image
Informationseeke in reply tobkoffman

Thanks Brian

I'm trying........ cheers Ms B

ladyprescott profile image
ladyprescott

Good Morning...I'm into my ninth month on IB and in January began having horrible leg pain at night. I wake up middle of the night as I've been laying on one side or the other and the pain is so bad. It began after a trip to see my daughter where she has a three level home with 18 stairs down to the basement. Up and down all the four days I was there, came home to horrible pain. Will be seeing doctor on the 15th of this month. Thinking perhaps something in my lower back or an arthritis trigger from the stairs, or the IB rearing it's ugly pain as I've heard others say pain begins after a few months. Just not sure. Carole

W00dfin profile image
W00dfin

My first two months were rough and I still get knee and hand joint pain after almost 2 years. I get relief from the salonpas pain patches even though the aspirin is contraindicated for low platelets. I only use them for a day or so until the pain stops. Ice packs (20 minutes) also help.

Twas profile image
Twas

I thought I read on here that co q 10 is a good supplement to try?

patagozon profile image
patagozon

"So here's a question from Judy. She says, I'm not able to get an answer from my husband's oncologist regarding ibrutinib (Imbruvica) and severe body cramping. Have there been any reports showing this is a possible side effect from ibrutinib? "

See article for Dr Sharman's reply (there's a transcript at the bottom of the page, so you don't have to watch the video):

patientpower.info/video/are...

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