My haematologist said the long term plan was to get me on Ruxolitinib and I'm wondering whether I should be pushing for it or just leaving it to his judgement. I had Ploycythaemia Vera for 27 years ( diagnosed at age 47) and ,besides some sort of radioactive injection in the early years, lived well on venesection which was eventually only needed every six weeks. A couple of years ago it has progressed to probable Myelofibrosis- my spleen was 23cm two years ago, I developed gout which is well controlled with Allopurinol. He sees no benefit in doing a bone marrow biopsy. I am now back to four monthly appointments. However I am increasingly fatigued and have had episodes of high temperatures veering between shivers / sweating , aches and being completely wiped out. I don't know whether to be relieved if I don't meet the criteria for Ruxolitinib yet- the potential side effects of the treatment can be off putting - or pushing to get on to it to increase my life chances. I would appreciate people's views.
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