Sore joints and CLL

[katyadam]

Curious to know if anyone has experienced sore hands / wrists or knee joints especially early morning whilst on ibrutinib. Been taking it daily for about 6 months for CLL.

[Seok]

Yes Katyadam

I had knee pain too when I was taking Ibrutinib. Switched to Acalabrutinib a year ago, knee is back to normal. You may take a look at my profile and my previous posts as I’ve documented my journey with Ibrutinib there too. Hope you get over the discomfort soon.

[katyadam in reply to Seok]

Thanks for replying, that’s helpful 👍🏼

[TimHB]

Most definitely! I've been on Ibrutinib for 3 years and have what my doctor calls "roving bone and joint pain", mostly in my feet and hands. It's worse in the mornings and sometimes flares up in the evenings. I take Tylenol when it's especially bad. I'm about to switch over to Acalabrutinib so hopefully that will be the end of it.

[katyadam in reply to TimHB]

Thanks, will speak to my dr about it next week. Haven’t heard of acalabrutinib - hope it works well for you. 🙂

[dvd1955]

I too had the roving joint pain. I was only on Ibrutinib for six weeks. I also had severe bleeding issue and that is why the treatment was stopped. ONC says no more BTK inhibitors for me. I'm on Venetoclax now, with just minor thumb joint and wrist pain.

[katyadam in reply to dvd1955]

Thanks, hope you continue to do well on ventoclax- I’m a bit disheartened as I felt like things were going well after 6 months on it. See how it goes.