Hello @Bonny16, I’m sorry to hear about these nasty side effects, they sound very uncomfortable and scary.
I’m going to tag our @BloodCancerUK_Nurses here as they might be able to talk through the clinical side of restarting after reactions like yours, particularly around what to look out for and how the reduced dosage approach is designed to help.
In the meantime, you’re definitely not alone in navigating azacitidine and its side effects, as there are other members here with Chronic myelomonocytic leukaemia ('CMML') who’ve been through side-effect experiences (though not alwasy exactly rhe same), such as this recent thread which might be worth a look. You can also use the ‘related’ feature at the bottom of the page, or the search bar at the top, to find other posts that might be helpful.
We also have information about CMML treatment on our website which covers azacitidine and what to expec, just in case you haven’t seen that yet.
If you’d like to talk anything through in the meantime, our Support Line is here for you on 0808 2080 888 (option 1) or support@bloodcancer.org.uk. It’s staffed by our Blood Cancer nurses, and they are completely fantastic.
Take care,
Ceri - Blood Cancer UK Support Services