Celebrating new arrival PV !!

Having a glass of wine and trying to be posative, after red cell mass (BMB to follow) it seems I have switched sides from ET to PV. Had a venesection today and fainted !! Just read Ruby Ruby Ruby's post from a few months ago, did you all get a badge ? Apart from more intense fatigue, itching, and night sweats sure life will be the same, or is there anything else I can expect to happen?

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  • Welcome to the PV club. There is probably not much difference and sadly no badge!

    I wish you well. Mel x

  • Hi, 

    Welcome to the jolly band!

    I think the main thing is to try and conquer these jolly irritating symptoms yourself.

    Itching - make a note of when it happens - were you doing anything that might spark it off, such as showering, bathing, swimming, sitting in a draught, wearing synthetic clothing, drinking alcohol?

    If so, don't do it. I haven't had a bath or shower for 5 years! Aquagenic pruritis hit me so hard that not having baths and showers was preferable to the sheer purgatory of the dreaded itch. We had a bidet installed and I wipe the rest of my body gently with a flannel. I'm told I don't pong by family friends and husband!

    Likewise alcohol, trying clothes on when shopping, whatever affects you avoid it.

    Try to drink 2 to 3 litres water / 24 hours. Build it up if you don't already. Keeps your blood hydrated and may help with the fatigue and itching. I feel rotten if I don't swig plenty of water constantly. Prefer it to wine now!

    Get out and walk, cycle,  whatever you need to do to exercise. At least an hour a day.

    You could try to avoid foods high in histamine  - it helps me, may not work for everyone...these include

    Cheese, preserved meats such as sausage, smoked ham, bacon etc red wine beer, shellfish, and most kinds of fish inc canned, tomatoes of all kinds inc tinned, spinach, chocolate all fermented veg such as sauerkraut, nuts, bananas, avocados, papaya, all preservatives, additives and chemicals added to food - other foods can cause our bodies to release histamine such as egg white, strawberries, pineapple, ALL alcohol.

    Some list isn't it? Whether you give it a try depends on your severity of pruritis.

    I was willing to try anything, but at the end of the day, fresh food free from added rubbish has to be better for us PV ers long term especially if we're gobbling chemicals in the form of medication.

    At this point I have to say there have been no studies as to the link between histamine and aquagenic pruritis but as antihistamines help a goodly number of PV patients including me , then maybe there is a link.

    PV symptoms are a very personal thing. Some people seem to experience lots, some hardly any.

    Read as much as you can, www.patient power as well as mpnvoice.org.uk are both well worth looking at, research your symptoms, and be your own " project manager"

    You'll be fine I'm sure, but I would add, make sure you have complete faith in your haematologist and treatment - if not - move to another who specialises in MPNs

    Best wishes,

    Louise

  • I also have PV. Don't worry I've fainted 2 times I have to stay put drink plenty of water! I started Pegulated Interferon today and have been very nauseous. Are you just having venesections and regular blood test.  

  • Thank you all, 

    I have conciderd my self an old timer and an expert in MPN's and am finding it hard to deal with the progression to PV, ET was a walk in the park compared to how I feel now! I am aware of all the advice I have previously given yet am finding it hard to practice what I preach, Now I am wanting support I am feeling guilty for only reading most posts and not replying to them. Good luck to all. Ourlife 

  • Sorry  to hear of the new arrival.  I read the  posts here and feel thankful  I only  have ET.  Have you  read  any statistics  as to the  prevalence  in transformation  from  ET to  PV.  My doctor  just says not to  worry.

  • Hi Kerri2,

    I have not read any statistics about progression from ET to PV but belive it happens to around 10% of patients. Your Dr is right not worth worrying about until it happens hopefully in your case it won't.

    Ourlife

  • Hi. Welcome to the ET to PV club! I haven't noticed any major differences. I was having a venesection every month, at my last appointment I was able to go 2 months but I suspect when I go back in 2 weeks time I will need my next one. I do notice a difference after a venesection, although not pleasant, it's not uncommon for me to come home with plenty of needle holes and massively bruised arms! 

  • "Had a venesection today and fainted !!"

    On my first venesection, a doctor did it and thankfully I was laying down. I said to her "Where'd you think your gonna stick that ?" She said "In you arm". I said "Last time I saw a needle like that my aunt was knitting a thick jumper.....".

    Thankfully (?) I've moved from large, sharp metal instruments on to drugs.....

    :-)

  • KevinJH, that is exactly what I call them.... knitting needles! AND with a flat shovel type tip, instead of a sharp point. The first few phlebotomies I had, I complained to the phlebotomist but she said well do you prefer us to use leeches?? So I got used to the needles. Apparantly, leeching is still being done in the US. ha!

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