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Itching

Posted , 11 users are following.

john57598
john57598

Hi all. I was diagnosed with PV Primary 4 weeks ago and have had 4 venesections and take aspirin daily.

I have a terribe itch which was one of my original symptoms which is not going away. It is worse when I shower, even with cool water and is usually but not always, on my chest. It also starts when I sweat.

It is so bad it drives me crazy and I have to move around the house singing or shouting out at times. (my wife thought I had tourettes.

Has anyone else had this itching probem and does it ever go?

Thanks in advance.

John

0 likes, 19 replies

19 Replies

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  • ItchyChris
    ItchyChris john57598

    Posted

    Dear John57598,

    I suffered in the same way as you for several years before being diagnosed with PV.

    There is a treatment for the condition, but I would not recommend it. It is PUVA (programmed UVA light treatment) but it raises you susceptibility to skin cancer to an unacceptable level. I have had something in the region of 43 BCCs (Basal Cell Carcinomas) and one rather unpleasant SCC (Squamous Cell Carcinoma) and am awaiting a date for surgery for the removal of seven BCCs at the moment.

    Since PV is now regarded as a form of cancer (it was not when I was diagnosed) you are starting on the back foot.

    I know how bad the itching can get and all I can say is keep cool and dry. I used to get it on all parts of my body except for my hands and face and it drove me to distraction. Fortunately the itching decreased when I started on Hydroxycarbamide and gradually reduced over a long period of time. I found that a long soak in the bath once a week was much better than a quick shower.

    Sorry if this is not what you wanted to hear but in my humble opinion both PV and itching are easier to live with than their cures!

    ItchyChris

  • david02304
    david02304 john57598

    Posted

    I have had PV for many years. Currently on Aspirin and Anti Histamine, with Venesections. Anti Histamine of limited use. When itching comes it can be very bad, red hot needles. Two things trigger it.

    Sudden change of temperature when moving from room to room.

    This can be controlled by setting heating correctly and/or using clothes that can easilly be taken off/put on

    Second cause is sweat. This can be through exercise or hot flushes.

    In the recent heat wave I brought a tower cooling fan, better than any medicine.

    When I feel an itch or sweat coming on I go and sit in front of it for a short time, symptoms go.

    I have not itched since I brought it.

  • john57598
    john57598

    Posted

    Hi everyone that has been kind enough to reply to my post.

    Thank you all for your constructive comments. Hopefully I can find a way of stopping the itch at some point, but if not it is helpful in some way to know you are not alone.

    John

  • john57598
    john57598

    Posted

    By way of an update..... I have been taking Ranitidine, Fexofenadine and Cetirizine, three different types of anti-histamine. The itching has not decreased in the slightest. I am to see my consultant in a few weeks. My numbers are being conrolled well enough at the moment with venesections but I feel I should ask about going on to Jakavi for the itching which sometimes drives me to dispair. Does anything think a) that I should and b) that he would put me on it?
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