I have recently been diagnosed with polycythemia vera following a routine blood test . My lovely Haematologist told me about MPD Voice . I am so pleased she did as I have found your site so helpful . Me and my family were shocked and a little overwhelmed to be honest when this all happened as we really didn't know much at all bout these myelo proliferative neoplasm diseases. It all seemed so complicated and a little overwhelming but reading everyone's stories on here has really helped . I had a DVT ando bilateral Pulmonary embolism at the start of the year and the medics were scratching their heads as to why - my Haematologist thinks undiagnosed PV may have been a contributing factor.
I have just started a series of venesections to see if this helps and if not they are querying starting me on interferon ( I have history of melanoma so hydroxyurea is contra-indicated.
Also they are changing my rivaroxaban to warfarin. She also wanted to start me on aspirin but unfortunately I am allergic to it ( makes my eyelids and airways swell ).
I have a couple of questions
Has anyone any experience of interferon ?
Are there alternatives for aspirin to help reduce stickiness of the platelets ?
Also does anyone have any information about the allelle burden and if this is a prognostic indicator regarding future thrombolytic events - they keep saying I am high risk because of my previous DVT and PE
Sorry for all the questions but everything is all so new to me - I just feel if I am to live with this disease I want to understand it and also all the options I have - as they say knowledge is power !
Thank you for taking the time to read this .