My first post as I was only diagnosed late December 2016 with PVJAK2. I have been reading all your posts with great interest and have found answers to many of my questions on here, relating to symptoms connected to PV, particularly breathlessness and exhaustion - my mind seems to go blank when I see my specialist! The Hydroxy 500mg daily) aspirin and venesections ( have had three in total since diagnosis) are really helping with most of the symptoms but the breathlessness has only started in the last two months so am unsure if it is a "symptom" or a side effect of the treatment. My doctor sent me for an xray last week after I mentioned the breathlessness to him a couple of times, no results yet. Most days I feel fine but there really is no warning when the exhaustion might hit. Have gone from weekly appointments in the beginning to six weekly so feel I am going in the right direction. I am finding this Group an invaluable support and source of information.
I'M RELATIVELY NEW HERE!: My first post as I was... - MPN Voice
4,581 members • 6,268 posts