Haven’t been on for awhile but need your thoughts if anyone can relate. Stopped Sprycel after 6 years. Have only been off for a month. Labs next week. The problem is I feel worse off of it. Joint pains have been terrible as well as worsening fatique and depression.I don’t get it. I did read about withdrawal being a possibility.? The only positive is I am no longer constipated. 😂 Anyone else experienced feeling worse off the TKI? Thanks for any advice.
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Stopped sprycel
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I stopped it in January, and to be honest I didn’t have any unusual symptoms. But the joint pains you describe are textbook withdrawal symptoms and they ought to resolve after a while. I know only of one patient who re-started their TKI due to withdrawal symptoms rather than a rising BCR-ABL1 result.
I’m not so sure about fatigue and depression, but maybe others have experience there.
David.
Dawn, I wonder if we have communicated on the LLS site. Your question is mine. I stopped nilotinib at the end of April. I developed musculoskeletal pain in early to mid-June (mostly hands and knees). I restarted at the end of July due to rising transcripts. I still have joint and muscle pain to the point it scares me. I talked to my GP about possible arthritides and even Lyme Disease. I have no evidence of a tick bite, but we camp and have been hiking during this time.
Would love to hear from anyone who has stopped TKI, developed withdrawal symptoms, and for whatever reason, had to restart. How long did it take for the pain to subside? Thanks so much in advance!
Hi , yes we have communicated on the LLS site. Good to hear from you again. Honestly I have felt worse off the Sprycel than on it. My fatigue level has also increased along with the pain. Go figure. I am awaiting labs again on 8/21. I am not sure what to do. Yes would love to hear from others I was having problems getting my full report on the BCR ABL but with alot of calls and finally having my primary call I got them. Anyway that’s the story. Dawn
Dawn, were you on a reduced or full dose of Sprycel when you stopped? Our experiences are all so different on these TKIs, I had to laugh when I read that you were no longer constipated. Whereas, I hadn't felt so regular for years before I started Sprycel. :) I remember extreme fatigue when I started that lasted about 4 months and some other weird side effects. By the time I switched to Tasigna due to ongoing PEs (I was on Sprycel for 9 years), my dose was 25mg qd so stopping was not like running into a brick wall for me.
Mayo posts all of my test results on their portal as soon as they are available. I probably see them before my doc does. Do you have a patient portal where you can access test results?
It's early days yet for you so I hope your pain decreases and your energy increases soon! Please let us know how you are doing. ~Pat