Ibrutinib bone , joint pain

[cartwheels]

Now like most of us I experienced bone and joint pain when I first started ibrutinib over 6.5 years ago, which after a few months went away as my body adapted. My question is now my numbers are rising again lymphocytes now back over 5000 I have received experienced the same bone and joint pain ,in the last week first my knee now my elbow. Has anyone else experienced this after many years of being on ibrutinib and I appreciate that of course I may now be failing ibrutinib as my numbers suggest and consultant aware. Obviously still taking ibrutinib daily although my bloods are now being checked every 6 weeks as opposed to 12 .

[lankisterguy Volunteer]

Hi cartwheels,

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I'm sorry that no replies have been posted yet.

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You may find some useful replies

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Len

[Ginajetta]

I’ve been in imbruvica a month shy of 5yrs. Bloods have been stable except white count is still at 18,500. Doctor some never get wbc but are considered stable. I feel same way I always keep hoping imbruvica working. When I started imbruvica had much joint and muscle pain. But became less frequent but still get.

[LynnB1947]

I was on ibrutinib for SLL for 9 years, & the bone & joint pain was greatly diminished over time but still occurred from time to time but then would resolve after 2-3 days. Currently, on a drug holiday. Wishing you the best.

Lynn B

[Northland]

I have been on Ibrutinib for 39 months and my joint pain has mostly diminished in 2023. Hopefully the meds will work as well and as long for me as they have for you.

[Doggoneit101]

Yes, I did. I would wake up with different pains everyday. Somebody's it felt like I was walking on broken feet and I was in horrible pain. I had to come off of Ibrutinb for quality of life issues. I spent more time in the hospital than I did at home. I felt like I was constantly complaining to my oncologist. They would slowly lower the dosage to see if it helped. It didn't help with my issues and they oncologist said I had relapsed because my counts starting creeping back up. I was so happy when they said for me to stop taking it! I was also worried that every treatment was going to be horrible like the Ibrutinb was for me. I was wrong because I am now in a "partial remission" after 2 years of Venteclax. What an amazing drug! My point is this time may have been discouraging but chin up next time may be totally different. Everyone responds to everything differently. Here's to better days in the horizon.

[Hidden]

I think arthritis is a listed possible side effect? I find much useful information on Drugs.com