Polycythemia Vera rubra

Posted , 6 users are following.

hi there

ive been diagnosed with pcv 2 years ago and altho i suffer from the normal side effects like fatigue vision problems and so on.

however the itching is the worst i wonder if any fellow sufferer's have any ideas on how to stop it, an American woman mentioned protein powder before a bath or shower but im not sure so if any ideas please get in touch.

Tony

0 likes, 16 replies

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  • Posted

    Hi Tony

    Try the Gastro Resistant Asprin 75mg I was on this and then got told I didn't need it but the itching got really bad so I decided to go back on it which really helped it doesn't stop totally but loads better

    Glenn

  • Posted

    Hello tony,

    I stopped taking showers, which brought on the itching, and started to take baths instead. I read that if you add about a dessertspoon of baking soda to the bathwater, as it's running in, it helps.

    I found that it does.

    • Posted

      Thanks Angela

      unfortunately i can't stand baths due to being the oldest of ten and having to share a tin bath with my siblings lol but thanks for the advice

      Tony

    • Posted

      unfortunately having the boilingwater poured from the kettle to warmthe bath up is a hazard i dont want to face again ha ha

      by the way uin the uk or the us

      Tony

    • Posted

      i live at north anston now although im from Sheffield originally youlive ina lovely place which i visit loads.

      ive been diagnosed with the pcv for over 2 years now i hopeyou are in good health

      Tony

    • Posted

      SITHEE!

      North Anston!

      North Anston's not bad either. 😃

      My dad, many years ago, organised the bin men's rotas for North Anston and round that way. He used to come home with some funny stories about bin men and their work. 😃

      I got diagnosed in spring 2016. Been on aspirin and venesections ever since. Should be on the old hydroxycarbamide but I refuse. So far, so good, But I can't wait for my next venesection. Feet are fizzing like mad!

    • Posted

      Hi Angela

      the binmen round here are rubbish so we no who to blame now ,only kidding lol.

      i had to stop with venasection as my blood pressure used todrop do im taking the cancer drug. my right ankle is itching so bad i could cut it off lol .

      i go to rotherham for my treatment due again in 3 weeks anyway stay healthy good to chat

      Tony

    • Posted

      I go to Chesterfield. A lovely lot.

      Stay as well as you can. All the best.

  • Edited

    Beta Alanine. It has saved many sufferers from this plague (my name for it). I take it first thing in a morning and then 12 hours later. It does not not stop mine but it certainly helps. Showering is still a nightmare but mine was never restricted to water.

    Others claim it stops it altogether.

    • Posted

      Thanks john

      i will certainly give that a try and thanks very much for the tip

      Tony

    • Edited

      hi john

      thanks for the tip i take it everyday itchings a lot better and showering is a lot better many thanks

      tony

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