Just been diagnosed with Polycythemia Vera

Only just signed up following confirmation last week that I have Polycythemia Vera and the JAK 2 blood test came back as negative.

I have been suffering terribly the last few months with fatigue,confusion,ringing in the ears,and very severe tingling all over which feels like I have had an electric shock.

Work have been great at supporting me but I have to get on top of these symptons.

16 Replies

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  • how r yr blood counts? what drugs r u on?

  • Hi James....u got confirmation on the basis of Symptoms or blood counts? As such ur jak2 report is negative

  • What is ur EPO level ?

  • Hi.Thanks for the replies.

    I had a JAK 2 bloodtest and also a bone marrow biopsy.

    They said that the JAK 2 came back as negetive but the bone marrow biopsy confirmed PV.

    I was told i'm in a group of 5% of people that have it without havng the gene mutation

    I had a venesection last week but haven't felt any benefit so gave them a call but they advised that if that didn't work they won't try another one and just advised they will see me again in two months and to give up smoking.

    I'm not a heavy smoker at all and will look at stopping but if smoking was really the issue then surley alot more people would be suffering with this.

    I wasnt aware at the time I should have made a note of my EPO level and it's only when I've started to read up about it I noticed it would have been helpful.

    I have to go for a liver and spleen scan so something else may be offered following that but should I be doing more?

    I'm sure I can cope PV if I can get on top of the symptons and any help would be grealty appriciated

    James

  • Oh and this all started 6 months ago when I went to the doctor about extreme headaches and thought it was down to stress at work and he put me on Fluoxetine 20mg(Proxac) and I went to see him 2 days ago around help for the symptons and he has advised i increase the dose to 40mg which i haven't as i don't think they are the answer

  • Welcome to the forum James. It took a number of months and v'sections to get my bloods back to normal range,my symptoms significantly improved after that. Anyidea what your counts are?

  • I'm going to sound rubbish here but it was kind of a shock and I should have paid more attention to the detail which I will next time.He did mention that something was 58 and most people should be below 45 but i'm not sure what it was

  • Sounds like your hemocratic level is 58 as this should be 45.

    My husband has pv jak 2 positive

  • That sounds like your packed cell volume (pcv) james, its the important figure to understand at this stage. Mine was in the high 60's when first diagnosed. It may take a few more venesections to get down to .45, it may not, but you will get there and hopefully you will start to get some relief. I am 1 year post diagnosis, and am living a very normal healthy life now. Keep talking to us and ask Maz on this forum for more info, shes ace. Jo

  • Thank you Jo

    Just seems a long time to wait until my next apointment but I will start to bug my GP if they get to much for me.

  • Hi again, my response to this has disappeared. Definitely go to gp. They can give you a blood test to see if your counts have come down yet. Did the hospital give you a number to call?

  • Yes I was given a mobile number to call them which was great.

    I had a blood test with my GP a couple of days ago but they said they wanted to check my vit d levels but I have another appointment next week so I'll check if that test is enough or ask for another one so I can see if the counts have come down.

    This is all very new to me and I'm learning so much by the day.

    I think though since they told me I have PV that i'm paying more attention to how I am feeling where as before I kept putting it down to something else for example the itching was because I have cats or the ringing in the ears was down to blowing my nose to hard following a cold.

    They are easier to deal with when you think the symptons are down to something else

  • Absolutely, it can be pretty daunting. Try not to worry, sounds like you have a good gp who will support you. Im sure things will settle for you James. Do you mind if i ask your age? Im 43.

  • Yes I'm 42

  • Thats good. Most of us at this stage are just managed with sections and baby aspirin. I seem to recall that my symptoms really improved after they 'shrunk my cells'. I literally have no idea what that means but i know thats when i started to feel normal again. Id forgotten what normal felt like. All the best james. Hope normality is just around the corner for you.Keep in touch.jo

  • I was diagnosed with PV 8 years ago and am JAK 2 negative. Had scans on liver spleen kidneys. All clear.

    My first venesection made such a difference I thought they had given me something as I felt so much better.

    Yes the fatigue is a problem. There are times when I can sleep all afternoon and still sleep at night.

    I do itch especially if its hot.

    At my last appointment my blood levels were fine but I was still fatigued. My haematologist did another venesection so I am way below the usual 45. And I feel tons better. They are now looking to keep me on that level.

    I don't record my numbers as my haematologist is the expert and she is really good.

    Only on baby aspirin.

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