Hi I was diagnosed with cml in 2014 was on nilotinib 300mg and then went in to remission it was decided after taking the drug and how well I did that we could stop my treatment altogether but 2 months after stopping treatment I started having severe back hands arms feet stiffness and also my fingers especially first thing in the morning I was just wondering as anybody else experience this when actually come off the drug.Also unfortunately for me after not taking the drug for 8 months it's now coming back so start the sane drug but higher dose Friday.
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Cml
Sorry to hear about your relapse and that you are reverting to a higher dose.
Withdrawal side-effects are not at all unusual.
See Hokiemanll's post https://communityview.lls.org/statuses/4639
Musculoskeletal symptoms (eg, myalgia, pain in extremity, arthralgia, bone pain, spinal pain, or musculoskeletal pain) have been reported in eligible patients who discontinued TASIGNA therapy after attaining a sustained MR4.5. The rate of new musculoskeletal symptoms (all grades) generally decreased from the first year (34%-48%) to the second year (9%-15%) after treatment discontinuation.
https://www.hcp.novartis.com/products/Tasigna/imatinib-resistant-or-into...
Sorry to hear about your relapse Jackie and that you are reverting to a higher dose.
Withdrawal side-effects are not at all unusual.
See Hokiemanll's post https://communityview.lls.org/statuses/4639
Musculoskeletal symptoms (eg, myalgia, pain in extremity, arthralgia, bone pain, spinal pain, or musculoskeletal pain) have been reported in eligible patients who discontinued TASIGNA therapy after attaining a sustained MR4.5. The rate of new musculoskeletal symptoms (all grades) generally decreased from the first year (34%-48%) to the second year (9%-15%) after treatment discontinuation.
https://www.hcp.novartis.com/products/Tasigna/imatinib-resistant-or-into...
Thank you for your response I was actually starting to get a little worried as the pain is so bad worse pain than actually when I was taking the drug but now not so worried as you have put my mind at ease and my specialist was at a loss of why I was in so much pain as all test that were done cane back normal.Once again thank you for answering my question.