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Hello, I'm new to the forum and new to PV

Posted , 4 users are following.

angela_o..o
angela_o..o

Hi, I was diagnosed with PV the other day after four months of head scratching by my GP and the hospital etc.

I first had a problem when I cut my left hand at New Year (not drunk!) and after a couple of weeks my fingers started to go very cold and blue. GP said nerve damage. Then it spread to the palm of my left hand, plus hot itchiness and extreme tenderness in parts.

I still have the cold fingers, sometimes blue and now sometimes snow white and numb.

I have had three venesections, which made me feel wonderful and clear headed. Plus one aspirin per day. But I surprised the hospital by telling them that I still had a wonky left hand. They thought it would be fixed.

Then they said that I have two weeks, before my next appointment, to decide if I want to go on Hydroxyurea for life or not. I suppose the "not" would be more venesections and aspirin, which I don't mind. Drugs have never been my thing.

I have tried to look for information online to help me.  I am flummoxed.

I am 64, going on 65, have always been fit and strong. Vegetarian, non smoker and only like(d) the odd tipple.

Can anyone throw some light on my confusion?

Thanks for reading.

1 like, 6 replies

6 Replies

  • peter98873
    peter98873 angela_o..o

    Posted

    Hi Angela.

    I am not personally aware of some of the symptoms you describe.  It just goes to prove the variables associated with PV.  As far as Hydroxycarbamide (Urea) is concerned I can say that it is no longer the only drug that can be prescribed for this complaint as it formerly was.  More recent research into PV has been carried out and  at least one is available to doctors but this depends on various factors where tests have been concluded or not.  Only this week my consultant haematologist advised me that other drugs are also under research and will in the future undoubtedly become available on prescription for them to use.  It all takes time.  I was on Hydroxy for quite a number of years but was taken off for medical reasons and offered the research drug Ruxolitinib which I now take.  I can only say it has been very beneficial to me. No other research drugs have yet been released.  Hydroxycarbamide served me well for quite a number of years before I needed a change so you can be assured that it will work for you with medical guidance.  Other people on this forum similarly are on this drug.  PV is usually gained at birth, a defective gene, but non-hereditary I am told, which often does not affect people until later in life.  Doubtless you will learn of this during your trteatment.  PV properly controlled, should enable you to have a good future.  Hope this helps.

    • angela_o..o
      angela_o..o peter98873

      Posted

      New to the forum so not sure if this will be added to the thread or sent as a private message, but thank you for your reply.

      Here goes, we'll see where this message ends up.

  • harrishill1
    harrishill1 angela_o..o

    Posted

    Hi angela. There is good reason to go on the Hydroxyurea. I've been on it for four years. It works very well for me. I've read that it's not good to continue to have the venesections. I believe it is better to be on the Hydroxy. My hematologist is very good, and he manages my care. I hope you also have a good hematologist, because they deal with this rare disease and know more about it than our GP does. We can live a normal life span, if we are taking the medication. If not, it could develop to a myloproliferative cancer. I am now 74 yrs old, andfe male. I feel good most of the time. Still have itchy skin, and sometimes feel too hot, but live a normal life, weeding, walking, and zumba at curves.
    • ellen68007
      ellen68007 harrishill1

      Posted

      I was just reading your response to Angela to where you read that it is not good to continue to have venesectiions. I was told by the hemotologist that I am not to have it done. I have wondered why? My red blood cell counts are high 65. She did not seem concerned. My Polycythemia is secondary. I was put on a blood thiner and monthly B-12 injections. I am curious as to why no venesections because the only two that I had brought my blood levels down to a normal range. This comment may also help Angela with her decision. Thankyou for any input on this.
  • angela_o..o
    angela_o..o

    Posted

    Thank you both for your helpful and reassuring comments. You are very kind.  It is a wonderful thing having a forum such as this where people can meet others who know more about what is going on.

    confused

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