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Withdrawl Symptoms on half dose Imatinib

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Good evening,

I haven't needed to ask for help on here for ages and ages. Life is what it is with CML and we manage as best we can. Hubby went on half dose Imatinib in October after having an excellent response for well over 15 years. We were warned it was likely he'd get withdrawal pain because he'd been on meds for so long. All side effects, except severe night cramps, pretty much gone which is good and CML undetectable . We were expecting that if he got any withdrawal symptoms they were likely to appear around the 3 month mark after stopping the meds altogether. So, his plan was to consider staying on half dose and not taking the last step of completely treatment free. However, just before Christmas, the pain started. Achilles Tendonopathy came on gradually over a couple of weeks, in both legs and since then he has hardly been able to walk. It has not been responsive to any type of physio. Ibuprofen gel doesn't help and he doesn't like painkillers.

So, my questions are for anyone on half dose or treatment free.......has anyone developed Achilles Tendonitis or anything similar while still on half dose Imatinib? When did any withdrawal symptoms kick in? When did the withdrawl symptoms stop?

He really doesn't want to go back on full dose, he's been pretty miserable with all the pain and not being able to walk but 7 months in, it might be worth riding it out if there is an end in sight.

Thanks for reading everyone!

That sounds rough for him. Could there be anything else causing the sore tendons? Any other medication over the last few months, such as antibiotics?

David.

Lydia I'm really sorry to hear this, which fortunately for me does not reflect what happened to me, as described in some detail on this thread https://cmlsupport.org.uk/thread/11481/imatinib-dose-reduction-starts#po... . I was on 400 mg imatinib for >10 yeas, reduced to 200mg for a year, and then had a 17 month TFR attempt. When TFR failed I went back on to 400mg for a year, and have been back on 200 mg nearly 3 years ago. I had no discernable withdrawal symptoms on either of the occasions when I reduced to 200mg, or when I stopped taking imatinib. Like David I wonder if the cause of the tendonopathy is not something else. I'm not sure this helps, but I hope it improves for him soon.

Thanks for your reply, David. Yes, it's pretty miserable. He's had years of never being far from a toilet on branded Glivec, finding an improvement on generics but now, when he feels so much better in himself on half dose not being able to get out and about again but for a different reason. Just wondering now, he went on Vitamin B12 injections starting with 6 injections in quick succession from November 2023 then onto 3 monthly. Can't find anything to suggest Vit B12 supplementation would cause this, though, so that's not looking likely. Next step is MSK as neither Hammersmith or his haematology are thinking it's a withdrawal symptom. It might take a while but I'll post an update when we learn anything.

Thanks for your reply, Alistair. There's a lot in that thread of yours. We were fortunate enough to have a chat with Prof Clark at the time they were wanting volunteers for the Destiny trial. Reassuringly, your experience matches the outcome of Destiny. Going back on full dose TKI after loss of MMR gets the and CML back under control then half dose later on can keep it under control. I'm glad this has worked for you and other patients too. It addresses the idea that although the 400mgs is the standard dose it might not always be needed.

Lydia I think the musculo skeletal folks are a good next port of call. I have had some issues with ankles over the years, which a podiatrist diagnosed to the fact that my Achilles tendons were not vertical when my foot landed on the ground. I had some custom orthoses made with a slight wedge in them which sorted it out. My issue was not as extreme as you describe; good luck.

Yes, Alistair, you're right! That's his next move. I will post an update when we eventually get it resolved.