Anyone experiencing muscle and joint pain on Venetoclax?

[ReneeSusan]

I am having a tough time on Ven. I have been dealing with Gastro issues and now lots of muscle and joint pain. I am on Ven 7 months now, and the side effects are really kicking in. Headache, dizziness, joint and muscle pain, and Gastro issues. Oh and did I mention fatigue and weakness? I’m worried my body isn’t tolerating the drug and I’ll have to come off it.

Can’t get thru the nurse to speak with my doc. Very upset with UPENN and the doc that took over Dr. Mato’s patients.

Renee

[MsLockYourPosts Passed Volunteer]

I don't know anything about side effects of Venetoclax, but one thing CLL has taught me is to be an aggressive patient. Stay on UPENN until,you get through to the doctor. Would Dr. Mato talk with you by phone about your side effects?

[ReneeSusan]

Dr. Mato m

Has moved on to MSK in New York. The replacing doc doesn’t return calls. I sent a very strongly worded email insisting on a call back. Still have not received one.

Renee

[MsLockYourPosts Passed Volunteer in reply to ReneeSusan]

Keep calling both and e mailing. I would be looking for another doctor at the same time.

[maggiesgrandmom]

Renee, I sent you a private message.

[Hidden]

Are you taking any PPI medications ( etc Nexium)?

[ReneeSusan in reply to Hidden]

No have had issues with nexium in the past. My doc contacted me finally and she’s going to lower the dose to see if it alleviates the problems.

[mnmnewtons]

It was 8 months on venetoclax before those issues eased up for me. Maybe it is like Ibrutinib in that it was discovered that the dosage need not be the same for everyone to be effective. This is a hematologist issue. Someone should reach out to you.

[ReneeSusan]

Yes I agree and my doc finally contacted me and lowered the dose to 200mgs !! If that doesn’t alleviate the side effects she wants to discontinue Ven, which I hope doesn’t happen. Ibrutinib is not an option for me and I can’t take some of the others due they have a similar component to Rituxan.

Today is my first day on 200 mgs. Hoping for the best!

[kudoc]

I may have overcome gastro issues by taking VEN with dinner and taking 1 or 2 immodium 1 hour before dinner. Still can't control joint pain but pain in a particular joint lasts only about three weeks. Pain is primarily in feet and ankles.

[ReneeSusan in reply to kudoc]

Have you spoken with your specialist about lowering the dose?