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Anyone have TKI withdrawal going off Tasigna (nilotinib)?

Blood Cancers & Disorders | Last Active: Apr 15 12:17pm | Replies (5)
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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.

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Replies to "I had been on Tasigna many years and went off of in Nov I am thrilled..."
Colleen Young, Connect Director | @colleenyoung | Apr 12 5:25pm

@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?

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