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TKI withdrawal
Hello, Yes this happened to me when I tried to stop Imatinib. It wasn't worth it as my readings shot up too and took several months to get back to where I was before I stopped.
Just for the record I was dx 25 years ago and managed to get on a trial and have been on Imatinib ever since apart from the trial break of 3 months.
Thank you - that’s really helpful.
Did the joint aches and muscle pain stop once you returned to Imatinib?
For what it’s worth, I experienced joint and bone pain for most of the 11 years I spent taking imatinib. When I switched to 800 mg Nilotinib the joint and bone pain stopped even at the higher dose of Nilotinib. The higher dose did cause other issues though. I eventually made it down to 400 mg of Nilotinib. I liked that I only had to take 1 pill a day of imatinib but taking 2 pills a day of Nilotinib on a stricter schedule is still much better than all the bone pain.
I was able to reach undetected at 450mg or greater on Nilotinib but the side effects were still harsh. When I dropped down to 400 I got a similar reading to what I had on imatinib but without the bone pain.
JP
Thank you - this is all really interesting and building up a picture of joint pain with Imatinib. I had no pain while taking Imatinib but extreme aches since stopping. However I was also taking Citalopram - and I’ve since learnt that anti depressants are prescribed to aid pain relief for joint pains . Lots to discuss with my consultant at my next review 🙏
Yes the joint pain & aches went when I started taking Imatinib again and have since been on 300mg daily with hardly any issues. My PCR reading is currently 0.0008%. At the time I stopped Imatinib I was under Hammersmith Hospital, it would have been early days for anyone trialling TF and they were finding this a common problem. I am now under Peterborough Haematology and haven't seen the Dr since lockdown April 2020 - I have bloods taken at local hospital which are sent to Addenbrookes and have telephone consultation a few days later & collect 3 month prescription from local Oncology department.
I have so much to be thankful for.
This is the same regime I was under - 3 monthly checks dnd and a phone call - then consultant suggested I try stopping Imatinib as research suggests that many can remain in remission if you’ve been undetectable for at least 2 yrs on the lower dose - which I have . I was feeling so well taking my 200mg daily - and thought it would be easy to stop - giving my body a break from the chemo . The consultant said I might experience some aches and to have some paracetamol nearby- I wasn’t expecting to be floored .
I could barely walk around our village without feeling exhausted and aching muscles and joints . It’s been 2 months now and I’m less fatigued but still experiencing joint and muscle aches . As with when I was diagnosed, have put it down to my age - but think now it’s the withdrawal syndrome. I’m hoping I’m nearly through the worst - 🤞