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Tiredness and Imatinib


Good Afternoon all

I hope this finds you safe and as well as can be expected.

Just some advice please. I was diagnosed in December 2020 and at my last hospital appointment my wonderful consultant stated I was going into remission. Apparently whatever I'm doing I need to continue to do !!!

I have found the main side effect with Imatinib from the beginning is tiredness....some days I feel like dancing on tables....other days I feel like staying under the duvet. Even if I go into remission on these meds, can I still expect these side effect ?

Sorry if I sound a bit dense, for some reason I expected remission to coincide with normal me again. I'm back working from home full time but some days feel a struggle. I exercise when I can and walk regularly. Drink plenty of fluids and my last blood test everything was good.

Any advice for a weary warrior would be gratefully received.

Take care all

Deni x

Hi Deni

I think in time this will reduce but not go away completely. I have been on imatinib at various levels since 2007. For the first 11 years I was on 400mg, and had what I described to my wife as days I was running on empty, which I think you are describing here. (I was working in a fairly high pressure job, and some days it was a bit like wading through treacle.)

There is a thread on this forum entitled "Imatinib dose reduction starts" which details my journey for a year on 200 mg, then 17 months with no pills, then losing remission and going back to 400mg, and then in the last couple of weeks going back to 200mg (which is probably where I will stay.)

I think you will find your weariness improves over time, but in a few years (most consultants won't consider it until you have been in remission for several years)  dose reduction might well be a longer term way of improving it.  

Hi Deni

I was diagnosed on Dec last year too.

I think your experience mirrors mine.  Some days I'm perfectly OK - I can crack on with my day.  Then, I'll go through a few days where everything is an absolute effort.  Side effects come and go, new ones start which take their toll.  I figure its only been a year and its likely going to take longer than that to find a new 'normal'

I try to take it one BCR-ABL test at a time.  

Good luck to you!