Primary, Secondary PV or...

[devilish33]

Hi, first post here! Last month I got checked into hospital with "apparent polycythaemic picture" with Haematocrit at nearly 60% but everything else normal.

I've had weekly venesections to bring this down to 48%, and after a consultation it was suggested at the time it was secondary PV, as I came back JAK2 negative. In spite of that, i've had the BMB done, which wasn't too bad to be honest!

I thought (and still convinced) I have secondary PV (alcohol related, I do drink too much) but with the usual joint pains, dizziness and fatigue that's all listed as symptoms.

Fast forward to now, and they looked at my EPO level, and it was down to just above 2 (and then told it was a primary PV picture.) It's left me more confused then I did a week ago!

White cells were 8.7, haemoglobin 21.1 and platelets 240.

Last thing, I didn't have a venesection for 2 weeks - will be 3 by the next one - my Haematocrit jumped from 48-52% in just that time! Is that normal?

Sorry for rambling, I don't like usually posting on forums!

[Ebot]

Hi there.

This sounds like a question for your haem team! The important thing is, are they MPN specialists? I’m sure many on this Forum will testify to the degree of vague and occasionally erroneous info that sometimes emanates from haematology departments!

I don’t think it would be unusual to see haematocrit levels jump between venesections. That is why they can be very frequent particularly at the start of treatment / or diagnosis. Maybe you need to have a conversation about other interventions. It can take a little while to establish the best regimen to manage the disease. And it’s such an individual thing. They may also want to test for other mutations given you’re JAK2- . Let us know how you get on.

[devilish33 in reply to Ebot]

Thanks for the reply!

At the moment it's just with an NHS hospital, at a haemotology department, but i'm transferring to another one in Addenbrookes' in Cambridge early next year. Them changing from secondary one week to Primary this time didn't really help - just added more worries about where I go from here. At this time i'm pinning my hopes on it being secondary - but i'm more concerned than ever!