Hello there @Dibbers, welcome to the forum. I’m really so sorry to read of that Polycythaemia vera ('PV') diagnosis. Feeling numb sounds about right from memories of my own diagnosis with it. Perhaps you might feel something like grief too, which can come up for people. See how you get on.
You’ve found just the right place. Despite Polycythaemia vera ('PV') being rare there seems to be many forum members living with it who comment around the forum, and this thread is full of us! So please try not to feel alone with that diagnosis.
Something my lovely haematologist tells me regularly, that I’d like to share with you, is that we should live into normal old age with Polycythaemia vera ('PV') and that it shouldn’t be what causes us to pass away. Research and decades of treating Polycythaemia vera ('PV') shows that it doesn’t shorten our lifespans. Good enough for me!
Take your time and when you’ve got some headspace maybe have a look at this great Blood Cancer UK information about Polycythaemia vera ('PV'): Polycythaemia vera (PV) | Blood Cancer UK
Polycythaemia vera ('PV') is closely related to Essential thrombocythemia ('ET') and other Myeloproliferative neoplasms ('MPN') like Myelofibrosis (‘MF’) so here’s further information about these: Myeloproliferative neoplasms | Blood Cancer UK
I see that you’ve been suggested to take peginterferon alfa-2a AKA Pegasys and I know of a lovely thread full of forum members who take this, but for Essential thrombocythemia ('ET'). Perhaps you’d like to see what they’ve shared, and do reach out using an @ before their username with any queries: ET diagnosis finally sinking in
I’m also sorry to read of the Crohn’s and arthritis you live with, I imagine that’s a lot to balance, and sadly far beyond my non-medical understanding. Your haematologist is always the best person to talk through how various medicines will interact. Always let them know of any other health concerns as you might be surprised by how many can affect others, speaking as someone with a few chronic health concerns.
If you have medical queries or need for further resources then do consider calling the lovely Blood Cancer UK nurses as they are experts in this. Their free number is 0808 2080 888.
For what it’s worth, I take daily aspirin and hydroxyurea rather than Pegasys and used to have very frequent venesections without becoming anaemic. I no longer need blood removed as my medicine alone stabilises my blood cell numbers. Living with Myeloproliferative neoplasms ('MPN') means we tend to have very frequent blood tests. Our various blood cells are kept a close eye on by our specialists and they can adapt our dosages and frequency of venesections as needed. So I’d say try not to let potential anaemia worry you, it’s easily treatable from what others around the forum have said.
Hope that’s not too much of a bombardment @Dibbers! Do let yourself feel it all and remember that this diagnosis doesn’t need to feel as bad as it seems. We can live with Polycythaemia vera ('PV') pretty normally. Please keep us posted about how you get on, there’s a lot to take in but it’ll become familiar soon enough. I’ll keep an eye out for your posts.