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Imatinib reduction below 400mg

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Hi
I am 5 years on my CML journey and am a 59 year old male. I finally achieved undetectable status 9 months ago. I take 400mg of Imatinib daily and suffer from all the usual side effects of which bone pain, fatigue and diarrhoea are ever present.

I spoke to my specialist at our last meeting to discuss the possibility of reducing the dose now I have reached 2 consecutive undetected PCR results. I was hoping that a reduction may reduce the side effects.
We are to discuss further in 3 months after another PCR test.
However I have read several conflicting views on this. One being if you take a sub optimal dose below 400mg then you run the risk of becoming intolerant to the effects of the drug.
While I have also seen people advocating it to reduce the side effects.
Any advice or experience of the same would be welcome.
Mark

Hi Mark

I'm 18 years into taking imatinib, starting on 400 mg after diagnosis aged 50. The thread on the link below goes through the journey of reducing to 200 mg for 12 months, then a TFR attempt which lasted 17 months before my BCR-ABL rose to 0.154%, then another year on 400 mg, and now a return to 200mg where I have been undetectable for the last couple of years. https://cmlsupport.org.uk/thread/11481/imatinib-dose-reduction-starts#po...

You may also find this presentation useful. https://cmlsupport.org.uk/videos/reducing-or-stopping-treatment-who-and-...

I don't think the sub-optimal dose/intolerance question is valid for imatinib. In the presentation Prof Clarke says that anyone who has lost MMR after reducing to 200mg from 400mg regained MMR when they went back to the full dose. I certainly had a major reduction in side effects when I went to 200mg; less cramp. less flatulence, no eye bleeds, less fatigue. The improvement in side effects from 400mg==>200mg was much more significant than the further improvement when I stopped taking the meds. I am stable on 200mg and not tempted to try TFR again.

I hope that is useful.

best wishes

Alastair

Hi, I changed from Imatinib 400 mg because of dreadful side effects and changed to Dasatinib ,took 50 mg at the start then when undetected which didn’t take very long at all I lowered to 20 mg,now I only take 10 mg . You could start on 20 mg being undetectable and I am sure you will feel so much better quite quick .A mild headache in the morning for a a little while for a few days then it wears off .Made such a difference I felt like me again .

Many thanks Felix for sharing

Mark

Thanks Alastair for sharing the links and advice.

I am definitely going to ask for the reduction at the next review

Mark