Muscle and joint pain: I need some help! I have... - CLL Support

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Muscle and joint pain

Jemisavs5 profile image

I need some help! I have been on imbrivica for 8 months. I decided it was time to start running again and I went for a short run 1 1/2 mile. The next day i had so much pain in both knees. A week later I can't even walk. The pain is so bad. The doctor is holding my imbrivica and had me on prednisone for a few days but no improvement. Has this happened to anyone? I do not have gout. I will see doctor next week.

15 Replies

I have not had to be treated yet.

But I have a lot of trouble with cramps and muscle pains. Particularly at night. Terrible calf cramps.

I will contact if I get any information.

YES! It happens to me. I'm on ibrutinib and joint and muscle pain comes and goes. It can be debilitating and especially flares up at night. Personally, I don't want to interrupt my treatment so I take a lot of Advil and my docs even recommended CBD oil which I take at night and it works wonders. (I take 100% CBD, no THC.)

fell profile image
fell in reply to TimHB

Hi Tim, I'm on Ibrutinib and Venetoclax and was thinking about CBD oil for the joint pain in my knees - do you ingest it or is it topical?



TimHB profile image
TimHB in reply to fell

Sublingual. 3-5 drops depending on the amount of pain.

fell profile image
fell in reply to TimHB

Thanks 😊

Jemisavs5 profile image
Jemisavs5 in reply to TimHB

My Doctor does not recommend to take Advil more than once a day while on Imbrivica. Where do you find this oil?

TimHB profile image
TimHB in reply to Jemisavs5

I buy it at retail in L.A. It's fully legal nationwide. If you can't find it in a store in your area I believe you can buy it on Amazon. I use 100% CBD but in some states you can get it with varying amounts of THC if you're into that. Interesting what your doc says about Advil. My doc says I can take all the ibuprofin I want but Tylenol is prohibited.

fell profile image
fell in reply to TimHB

Tim, Usually it is the other way around. Ibuprofen is usually not recommended but acetaminophen is fine. You might want to double check that.

TimHB profile image
TimHB in reply to fell

Hmm. I have it in writing from Dr. Choi of UCSD running my clinical trial and also my hem-onc in L.A. They closely monitor every pill, vitamin and supplement I take and Advil is OK, Tylenol is not. I checked and acetaminophen is listed as "mild risk" with ibrutinib but ibuprofen is not listed as contraindicated at all, unless I'm missing something.

fell profile image
fell in reply to TimHB

That is so interesting because ibrutinib is a blood thinner and so ibuprofen is traditionally not recommended because of the risk of bleeding.

mrsjsmith profile image
mrsjsmith in reply to fell


I am in the U.K. and Ibuprofen was on my don’t take list.

To slightly change the bit of the body ! I have been on Ibrutinib for 5 cycles and have suddenly developed a bad back ache. One of my best friends is also my Osteopath ! Yes very handy. But I have now seen her three times in the last two weeks. Hip out twice and L5 once, but still aching. GP has given me Co-codamol, but not sure if it will help ? Back pain is down as a common side effect on my package leaflet. Wondering if this has suddenly happened to anyone else ? It’s so easy to blame Ibrutinib for everything!


Colette x

fell profile image
fell in reply to TimHB

Hi Tim, I found this online:

I’m sure that if you take it once in awhile it’s fine. It’s probably not a good idea to take it on a regular basis 👍🏻

Just an observation. I have had a lot of calf cramps since getting diagnosed. I wake up late at night with terrible calf and foot cramps. Several people have suggested this might be related to Losartan, a hypertension medication.

I will advise if I get any clarification.

Hidden profile image

How much water do you drink per day?


For what it’s worth, I have had Imbruvica related knee pain alleviated by a combination of the Salonpas pain patches and ice packs (20 minutes per session). Fortunately my knees alternately hurt not at the same time.

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