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CLL Support Association
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Muscle and joint pain

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.

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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.

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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.)

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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?

Thanks!

Fell

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

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Thanks 😊

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

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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.

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

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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 PDR.net and acetaminophen is listed as "mild risk" with ibrutinib but ibuprofen is not listed as contraindicated at all, unless I'm missing something. pdr.net/drug-summary/Imbruv...

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

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Hello,

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!

Regards

Colette x

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Hi Tim, I found this online:

drugs.com/drug-interactions...

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 👍🏻

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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.

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How much water do you drink per day?

Stuart

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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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