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TKI Withdrawl

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I was on Tasigna for about four yrs. During that time I had bone/muscle pain in my legs. I was told it was normal and one day when I went off the drug the pains would go away.

Two years ago I went off and have been in a deep molecular remission since. The problem is my muscle and some bone pain has increasingly worsened. I can not stand for more than an hour at a time, its very hard to walk, its hard to stand up, hard to sit down. The pain is like a bad arthritis, my thighs become very tight, lower legs too along with shin pain, my hips will hurt and if I over use my arms the muscles there will also hurt. The pain never goes away, 24 hrs a day 7 days a week.

I have worked 2 jobs for the past several years, my main job ids from home then I worked at a grocery store 2-3 nights a week. The pain became so bad that I had to quit that job.

I have seen a neurologist, and my nerves are fine. My blood work is fine and I have no inflammation.

I told my Dr that I really feel this was caused from the Tasigna but Dr said no way because I have been off the TKI for 2yrs.

Is there anyone else out there experiencing anything like this??

I was in imatanib for 5 years, started TKI last November and have been having similar pain/stiffness since March.

No inflammation markers in the blood so I've decided whatever is going on the pain/stiffness isn't harming me or indicating any issues so I'm just trying to get on with life.

I stretch in the morning for the stiffness and try to keep active. I will try the gym again soon for weights.

I also had stiffness and joint pain when starting tki and gym helped.

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TKI Withdrawal Syndrome