Anyone have TKI withdrawal going off Tasigna (nilotinib)?

Hi my friend is having lots of side effects.

@cubeth77
I’m eligible for treatment free remission this coming November and am leaning toward it. What kind of side effects?

I had been on Tasigna many years and went off of in Nov I am thrilled that I have stayed in remission but was not expecting the painful TKI withdrawal. Of course I have been on this drug starting with Gleevec since 2005 so, this is probably why it has hit me so hard. I still suffering from terrible joint, muscle, and skeletal pain. It is suppose to eventually go away but scares me that it wont. It has really affected my life.

@chrbrx1, I'm sorry to hear that you are experiencing pain as a result of the good news that you were able to discontinue treatment with Tasigna (nilotinib). I see in this study

"musculoskeletal pain or periarticular stiffness, which is usually transient. These symptoms can be managed with non-steroidal anti-inflammatory drugs, and occasionally glucocorticosteroids and acetaminophen."
Read more:
- Discontinuation of tyrosine kinase inhibitors in chronic myeloid leukemia: when and for whom? https://pmc.ncbi.nlm.nih.gov/articles/PMC7716356/

I, too, hope that this diminishes and goes away for you. Was any pain medication recommended for you?

Thank you for your response. No just Tylenol which doesn't touch it. I did ask for an RX for Gabapentin which I only take one a bedtime it helps a little. I am just hoping and praying that this isn't my life now. From what I have read it is suppose to go away after so many months and I know I have had it in my system for years so, I am sure it will take my body a long time. It is just frustrating because I do not enough data where there are other people who have been on it for so many years.

@chrbrx1 I have also been on a TKI for over 20 years. I just had to discontinue and the start up on Scemblix a next gen TKI and STAMP inhibitor. Frustratingly the only reason for the switch was my insurance would no longer cover Nilotinib even though now generic and thus cheaper overall. Don’t get me started on perverse financial incentives….Anyway- I am having pretty severe joint pain exactly as described. I spoke to my oncologist about it thinking it was a side effect of the new drug. He said about 25% of patients seem to have these withdrawal symptom. I agree it’s had a major impact on my quality of life which I hope and need to be temporary. Am taking nsaids. I didn’t think about gabepentin. Might try that. Let’s hope these symptoms are indeed temporary!