Does anyone have any similar past experience? Jane
I have PRV treated with hydroxy + venesection. M... - MPN Voice
I have PRV treated with hydroxy + venesection. My platelet counts have fallen and are now below normal. Is this Myelofibrosis starting?
Hello Jane13, I have spoken to Prof Harrison for you and she has advised that you need to speak to your haematologist for his/her advice about this as they have your medical notes, she also said that your platelets falling could be due to many things, one of them is MF, but there are others. So you really should speak to your haematologist about it. Kind regards, Maz.
thanks Maz, unfortunately have a v poor relationship with my haem, waiting for a referal elsewhere to kick in. Do you know where I can look up other symtoms of developing MF? Jane
Hi Jane, the first place to start is on our website, this link will take you to our MF page mpdvoice.org.uk/about-mpds/..., I can also send you one of our booklets about it which has lots of very useful information which I am sure will help you, if you could let me have your postal address, you can either private message me on here or you can email me at maz.cd@mpdvoice.org.uk. Maz
Hi Mazcd
My husband has MF and we live in Australia. There is not much info available and wondered if you would be good enough to send me a copy of your booklet. I would be happy to pay the costs. Thank you. Cheri