Terrible pain in my joints

[Jms19]

I have been on Ibrutinub for 13 months and have terrible cramping in my hips and back. Anyone else experience this sort of thing on this drug?

[TimHB]

YES! I've been on ibrutinib for 5 months and get terrible flare ups of roving joint pain - especially at night and at random times throughout the day. I normally get it in elbows, wrists, fingers, knees, ankles and/or feet but lately I've started getting it in the hip and in my spine. But that means it's working - the bone marrow is releasing bad cells so I welcome it. At the recommendation of my docs I take Tylenol and CBD oil.

[Jms19 in reply to TimHB]

Thanks for your response. I do take 4 extra strength Tylenol and it doesn’t even touch it. Hoping this like all the other side effects I’ve had, goes away. It stinks 😬😬

[Dom57]

Yes on the joint pain. I have had it in many joints over the last 20 months but seems to be worse in the hips now. I take Tylenol and just keep moving.

[Jms19 in reply to Dom57]

Thanks. It’s all we can do. 😚😚

[migirlusa]

My joint pain seems to travel from one spot to the other. So far I’ve chosen not to take anything as I’m sure my liver is working overtime getting this rubbish out of my system.

Pam

[Jms19 in reply to migirlusa]

Thanks. Your right, we do have to watch ourselves. I hope someday they find a cure. Take care🙏🙏

[NooNoo14]

I am 6 months into my Ibrutinib journey. So far I have had sciatic pain for 4-5 weeks and now have pain in my heel/ ankle. Still do not know if it is meds related or just old age 😀 But I do know joint pain is very common for others on here taking Ibrutinib.

Netty

[Jms19 in reply to NooNoo14]

Thanks, I hope it gets better for you and all who are suffering with these side effects. 🙏🙏

[saintjohn]

My fingers feel like they are turning into pork sausages big,round and plump

[Jms19 in reply to saintjohn]

I guess we just have to hope this all goes away. Thanks for sharing. 🙏🙏

[Robbie_W]

I had severe joint pain especially ankles, knees, elbows, wrists, and fingers on Ibutrinib. Swelling too. After enduring for six days, my Dr. deemed me intolerant and put me on Venetoclax. After a few weeks my blood counts almost all normal. I'm in the US where Venetoclax is approved for second line treatment.

[Jms19 in reply to Robbie_W]

Thanks for sharing. Are you having any side effects to the Venetoclax?

[Robbie_W in reply to Jms19]

No, no side effects