I have been diagnosed with Polycythaemia,
After bmb and skin biopsy, mine is Jak2 r564l Exon 13 germline variant, I’m on aspirin and regular venesections, does anyone else have this mutation??
Feeling lethargic headaches breathless etc, consultant states if bloods stable I should feel better but I don’t, should I feel better if bloods normalise?? The thing is they normalise briefly till next venesection.
Hello again there @Albert, I’m so sorry the testing showed you have that gene mutation and just to check is it Polycythaemia vera (PV) you’ve been diagnosed with? Confusingly, there’s a non-cancer blood disorder called polycythaemia (no vera) or sometimes erythrocytosis.
Glad to read you’ve started treatments, although the bloodletting can be tiring can’t it? Typically it’s 1/6 of our blood that’s taken at a time! Because of the nature of these blood disorders, our bodies will just keep on overproducing blood cells and we keep needing excess blood removed, hence why our blood cell numbers keep changing when tested.
From my understanding we can experience headaches, breathlessness, and unstable blood cell numbers. Please don’t tolerate these in the long-term though, make sure your specialists are aware of those symptoms and keep note for yourself.
Something to do with the excess blood in our bodies can cause all sorts of sensations and symptoms, I was told. What has helped my blood cells stabilise, so I need less phlebotomy, is daily hydroxyurea which slows down my body’s overproduction. It may be that you will be prescribed a similar medicine to help slow down your blood cell production too.
Perhaps you’d like to read about the typical side effects of Polycythaemia vera (PV), if that is your diagnosis: Polycythaemia vera (PV) | Blood Cancer UK
And just to say, please don’t tolerate headaches. I was told to let my haematologist know if I had bad headaches, and to take paracetamol (rather than ibuprofen) as I already take aspirin and it’s not advised to mix NSAIDS.
Take care @Albert, please know there are many of us around the forum living with JAK2 gene mutations and their related blood disorders and we’re here for support.