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TKI Withdrawal Syndrome (WS)

I was Dx in 2016 and started on 200 mg 2x/day. Had terrible side effects but reach MMR in less than 6 months, so started a series of dose reductions down to 100 mg 1x/day. Attempted TFR mid-2020 but had to resume TKI 80 days later, but switched to 20 mg/day Sprycel. Reached undetected again in early 2021 and have been there ever since. In December of 2024, with my oncologists approval, I reduced my dose to 20 mg every other day and plan to attempt TFR again if I remain negative at the end of 2025.

Just prior to that over Thanksgiving, I went for a 3 mile hike with my wife and later that evening came down with a GI virus. It must have gone to my lower back, because the next day I had severe lower back pain. We did the same hike 3 or 4 times every week, so it was not as if I was out of shape. Long story short, I had Xrays and MRI which showed significant DDD at L5/S1 and mild osteoarthritis in the facet joints in the same region. I started PT and felt completely well by late December. Unfortunately, I had a similar occurrence after a hike on Jan 2. Since then I have continued in PT and last Thursday had steroid injections in both SI Joints. I saw a neurosurgeon at Mayo Clinic on Feb 10 and he said he couldn't pinpoint the exact cause of the pain and that it could be a combination of these factors. He said there was no indication that I would benefit from surgery.

I am still hoping the steroid injections will improve the pain, but 6 days later, it is actually a little worse. And I am currently worse than I was 4 weeks after the original occurrence over Thanksgiving.

My question for anyone: Is it possible that my 50% reduction in dose last December could be contributing to my increased musculoskeletal back pain due to TKI WS and therefore be a contributing factor to why this is not resolving faster? I realize that WS usually occurs only after full cessation, but would like anyone's opinion on whether it is possible that this is happening to me and hindering my recovery from the back issues. Thanks

Hi there

I'm not sure if this helps but I also had joint pain and muscle pain while on imatinib, but this was mainly in my legs and arms, especially knees, shoulders and elbows. When I stopped the TKI in 2022 I expected the pain to subside, but to my disappointment it didn't. It was either due to TKI withdrawal or being 8 years older than I was before I started!

However, I'm happy to report that, with time, the joint and muscle pain have completely disappeared. It took around a year to 18 months though.

Sorry that I can't help with the 50% reduction experience, because I stopped the TKI cold turkey, but I'm convinced I suffered from TKI withdrawal (even though this was never diagnosed with me) and I wouldn't be surprised if your case is the same.

Best wishes

Martin