PV or not PV

PV or not PV

Hi everyone,

So I have my second venusection tomorrow and another one December 5th which will make three in total and I'm really hoping they are going to help with the fatigue i've been suffering with.

I had to take a few days of work last week and didn't get out of bed until 1pm and was in bed again by 9 which is so not me.

Today I feel almost normal which is great but i'm hoping the venusections will increase my good days.

My hematologist has told me though that he is unsure at this stage if I have Secondary Polycythemia or PV which is different to what I was told on my 1st visit so I'm a little confused now as I was told I had PV which the bone marrow biopsy confirmed but i've now been told the bone marrow biopsy was inconclusive as they couldn't get enough of the bone (I wimped out)

My EPO levels are confusing him though as these are low which I'm being told you would see in someone with PV JAK2 positive but I am negative.

Oh it's never easy with me ha ha

I've attached a copy of my blood results so if you guys know anything about these please let me know

James

3 Replies

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  • HI, welcome to the site you will get a lot of answers from people who have pv.

    My husband has pv jak 2 positive he was diagnosed 4 years ago this month.

    He only had a blood test to confirm the pv jak2 positive.

    He managed for 3 years having venesections he is 44 years old and the fatigue was terrible, so last October he agreed to start hydroxy he has had no side effects at all.

    This year he has struggled so much he decided to cut out caffeine altogether. he feels loads better. he went through a phase of being so down so the gp put him on a mild antidepressant he's been brilliant on these and can now think straight.

    He still works full time in a very demanding job. he has an hour travel to work and back that's on a good day.

    So in all he leads a normal life and we tend to not look into the pv we just let his consultant manage his blood disorder.

    Fingers crossed you get some answers soon.

    Tracey

  • Welcome and mpn is Confusing that's why we have the lovely maz to help and people on site will share their own experiences hope the site gives you the help and reassurance you need xx

  • Have you tried another test like enlargespleen or sleep apnea think?

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