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CLL Support Association
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Ibrutinib severe bone pain

My father got cll from last year. We have tried FRC regimen which was not effective. His disease is associated with p53 mutation. Now it becane refractory cll. We have started ibrutinib from last week. One capsul each two days.(mon, wed, fri...) but from the first dose he experienced a severe bone pain on his both legs. All pain killers except morphin have interaction with ibrutinib so we went through it. However each 4h morphin injection is not effective. I wanna know how long will this pain will continue? And will it get decrease by the time? Which remedies do u think will be effective in this period? Thanks

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How old is your father? One capsule every two days is not a standard dose of Imbruvica (ibrutinib), is this what his doctor prescribed?

Most side effect do diminish over time. I know some patients experience joint pain, and muscle cramps, but I have never heard of severe bone pain, except on other drugs like neulasta etc.

Hope it passes soon...

~chris

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He is 56. We just start ibrutinib and becoz dr was doubtful abt its sideeffects he will gradually increase dose till what dad will tolerate.

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I hope you find answers for your father soon! I had bone pain before I started ibrutinib 5 weeks ago, but had not thought about that symptom going away until I read your post. I'll 2nd that one every other day sounds unusual.

Jim

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As per my searches, people have suggested tylenol and plaquenil too. Also i c sme ppl got benefit from tart cherry and pineapple juice.

Last night iv used diclofenak ointment on his legs. Seems he had a tight sleep till now! Try it too. I wish it would be effective on u too.

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I have been on Ibrutinib for two months with the joint pain episodes reported by many others but nothing like you described. For what it's worth I used ice packs (20 minutes with 1 hour between sessions) and the salonpas pain patches. The episodes are now less frequent and intense after two months.

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Its good i hear the pain will be reduced!

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Thanks for positive outlook 🌞

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A friend in the NIH Ibrutinib trial was given prednisone for her joint pain, which went away after a couple of months and hasn't returned. The dosing for your father is something I have never seen before. Most people start on three pills a day taken at the same time (different times of day seem to work best for different people). A few have their dose reduced if side effects are not tolerated. I would definitely ask about the dosing. I would also ask what other options are available to your father if ibrutinib does not work or he can't tolerate it. Are there any trials available where you are?

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I myself have problem with this dosing!!! but its first time that our dr prescribes this medicine and is doubtful abt sideeffects. More over ibrutinib is a very new medicine in my country (Iran) which is not even added yet in generic medicines. The dr strategy is to increase dose till toleration dose instead of starting with a booster dose and decreasing it later! I dont know if it is an evidenced based idea but i know im so scared that maby this strategy makes resistance!

We have tried FCR regimen( fludarabin, cyclophosphamide and rituximab) before, which was not effective.

New medicines r not available in Iran, they r not added in national FDA list and not supported by any insurance. Therefore any next generation medicine should be inported for individuals by request!

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