Hi @Suzyq. I think I was on the EPO injections for over a year. I was told it can take eight to twelve weeks to get the full benefit of them and to find out if they are working. Sadly, they didn’t work that well for me and so it was decided to stop. However I know of another myelofibrosis patient for whom they work well, so everyone reacts differently. I now take Danazol tablets which help to boost my red blood cell numbers. You could maybe consider asking your haematologist about Danazol depending on how you get on with the EPO. I had no problems with the injections themselves, they just didn’t seem to be working. Warm wishes. Willow X
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Sorry epo didnt work for you willow i do feel alittle better but not been on them long…4 weeks …so im hoping for some luck for a change
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Congratulations on your recent anniversary, @Willow and for sharing your poem. It’s very poignant the way you described your shock and devastation on receiving your diagnosis and then to realise that you are reflecting back on it over twenty years later. You’re doing amazingly! Definitely a message of hope. Thank you.
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