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.