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Anyone have TKI withdrawal going off Tasigna (nilotinib)?
Blood Cancers & Disorders | Last Active: Sep 6 6:48am | Replies (6)Comment receiving replies
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.
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@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!