I was diagnosed with ET in 2003, platelet count 650, JAK2 not then discovered.After 18 years only on aspirin and platelets stable at 650, the count started to go up and on reaching 1350 I was put on Roferon-a. The count, after 9 months of treatment was 250-300. I am still, a year later, on the Roferon-a. The side effects are mainly constant pain from mid-spine down, relieved for sleeping by paracetamol and a half to one hour walk each day. My eyes also sometimes suffer from a shimmering aura but I rarely get a headache. At 73 years old and 53 kg I would like to reduce my dose from 2 injections a week x 3,000,000 IU. I can't find any info on a regime for dosing patients whose platelet count is now normal. My haemo is not easily accessible. Does anyone know how to find out and also if it is preferable to know if you are JAK2 + or - ? Thanks for any info.
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