Hot feet and hands
He has PV ( Jak 2 positive ) with pretty stable bloods on daily aspirin only at the moment ( after initial venesections and a spell on hydrox...
Starting on Hydrea
My platelets are down but still high they are 4565 but they were 4756 3 weeks ago so there is talk of me starting on hydrea. I have had a few...
I have Jak2 positive etc etc & after 3 yrs of monitoring & venesections, I had a bone marrow biopsy which also revealed smouldering myeloma....
How slowly does PV progress
Hi My first post I’m 62, was diagnosed PV just over a year ago, I reckon I was ET from about 2012 from past medicals....
I'm new here
I was diagnosed with PV on 16 Nov after a slight stroke at the age of 46....
I'm new here.....
Hi I'm Rob and I live in Hereford, England. I was diagnosed with PV in October....
Newly diagnosed and curious
Hello everyone, Had Jak2 test in March and searching for information led me to this forum. Saw consultant in middle of June and he told me I ...
PV & Venesections
Hi community, I've was diagnosed with PV about 3 years ago and have gone through many tests including a couple of sessions at Guys hospital....
An explanation for why I am fatigued.
My Haematocrit has finally dropped below 45% which is good news. The Haematologist explained that it was a side effect of PV as the cancer ab...
New diagnosed Question
I have had bone marrow biopsy and it shows no scarring right now so its one or both of PCV or ET we think. My Haematocrit level ( hopefully t...
Haematacrit levels up and down ?
Hi I was recently diagnosed with JAK2 + Polycythemia. I have had weekly venesections for the past 4 week aimed at reducing my haematacrit lev...
I was diagnosed in April with reasonably high levels... I have had Venesections almost every week since ......
Pv, who do you see?
Hi all I'd like to ask which nhs professionals do you see and how often? I'm a bit underwhelmed by information and wondered if others have th...
Hey, I don't often post these days or have time to read everything but I just wanted to put a quick question out there myself today. Anyone e...
Has anyone else on this forum had PV and moderate risk of familial breast cancer?
I have been diagnosed with pv for 2 years managing to maintain levels with venesections 3-6 monthly. Ie side effect in relation to pv or prob...
I was diagnosed in April & have had regular venesections since then, I am now iron deficient & it's looking like Hydroxycarbamide next. Howev...
Annoying dizzy spells with pv
I've recently been diagnosed with pv I've had so far 7 venesections and my levels seems to be going in the right direction except my playlets...
Haemochromatosis & MC
My iron levels are reducing through regular venesections and natural blood loss, but I'm wondering if there's anyone out there with haemo who...
Why have I now got anemia?
The thought of progressing to MF at the age of 55 is troubling if I'm honest....
PRV stabilisation question
I'm interested to hear from PRV patients who are now more stabilised using venesections to understand if you still suffer from the same fatig...
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