CLL Support Association
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Soreness on ibrutinib

I've been on ibrutinib for 28 months and a recent exam showed no detectable CLL cells after blood examination by microscope. I have had few side effects but do seem to have an unusual amount of join and muscle soreness. My uric acid and kidney tests are in the normal range. Has anyone else on ibrutinib suffered persistent joint pain, or found a remedy for it if you were treated?

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When my husband was on Ibrutinib, I had him take MSM, which is a sulpher based supplement), which does not interfere with Ibrutinib, and is wonderful for the joints, and arthritic type pain. He never experienced any joint pain while taking the drug. I just had him take it preemptively, so I don't know if he would have had joint pain if he didn't take it. But, it might be something for you to consider, unless you are afraid of supplements. They get a bad rap around here.

Vitamin C is also anti-inflammatory, but don't wait for your doctor to recommend it. He won't. My husband also takes lipospheric vitamin C, and 800 mg of magnesium, and again, never had any joint pain. I don't have any concrete proof, but it's worth a try for some relief I would think.

Lastly, you quality of life is important. If you pain is making your quality of life not enjoyable, I think you should address this with your doctor, and don't let him/her dismiss your concerns.

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Thanks for the info. I've been taking 2,000 mg of vitamin C and increased Vitamin D, calcium and magnesium for about six weeks but very little improvement. I will look up the acronym MSM. Not averse to supplements.

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I'm sorry, I meant to type that out for you as well. MSM is methylsulfonylmethane. I would have him take 2000 mg. I myself take MSM with glucosamine for my back pain, but when on Ibrutinib, you can't take glucosamine.

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I take imbruvica (ibrutinib) for CLL, and also take glucosamine. I just spoke with my pharmacist about any interactions between the two compounds, and she said that she cannot find any studies that suggest any reason for not being able to take glucosamine with imbruvica (ibrutinib). Is there some info I'm missing? Thanks, Jim

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Please remember that the advice or suggestions made here do not replace the relationship between you and your Dr.

You should always consult a healthcare professional before changing any medication and this should include supplements.

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Hi, I have been on Imbruvica for 26 months and have joint pain also. Mostly when it is cold and damp outside. My Dr. prescribed pain medication.

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The joint pain I had on Ibrutinib was intermittent, very painful and I didn't find an effective painkiller I'm afraid.

However, it has lessened over time, like all the Ibrutinib side effects I've had, and I think I've only had one mild attack in the last 6 months having been on it for 30months now.

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Two years on Imbruvica and no joint or muscle pain. Take an occasional Advil or similar if I overdo it doing chores. The one thing that seems common is our Imbruvica experiences are all different

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Been on ibrutinib for 9 months. Pain started after 6 months. I will try the MSM that Crystalsky recommend. Trilpub im so happy for you about the recent blood work. It's encouraging that ibrutinib is working for most of us.

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