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harrishill

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harrishill1
harrishill1

Hi, I was diagnosed three yrs ago, with PV, with mutation of the jak2 gene. At the same time, I was diagnosed with gout. I was very surprised by both diagnoses. The gout pain was in my knee, and in both big toes. I had thought it was arthritis, because I also have rheumatoid arthritis. The big toe pain and also the knee swelling were definitely related to the gout. Now, I take meds for that, and also follow a gout diet. Usually a CBC and urinalysis will make the gout show up. Hope none of you have all these problems, but I have to say, I am coping well, and very happy that the Hydroxyurea and allopurinol I take are working well for me. I get a couple of hours of exercise each day, as well as weeding, housework, etc. I keep busy. Have to admit, PV does make me tired sometimes. I take a nap when I need it. harrishill  

0 likes, 3 replies

3 Replies

  • clem19079
    clem19079 harrishill1

    Posted

    I ain't surprised by anything this decease throws up. At the min I have restless leg syndrome and have had virtually no sleep in last 4 days. I have high blood pressure and because of pork and high blood pressure or both , I'm low in iron so explains restless leg. And I can't take anything thing can take for low iron. Though I was advised to drink tonic water because it contains quinine in it. Remains to be seen if it works.
    • harrishill1
      harrishill1 clem19079

      Posted

      Hi clem, you didn't mention if you are on meds for PV. If you are, yes it does lower the iron in the blood. Did your hematologist say if the high blood pressure is related to PV? Just wondering. Nice to hear from others who have this disease.

      harrishill

    • clem19079
      clem19079 harrishill1

      Posted

      I'm on hydroxycarbamide, hydrea for short as well as a spring. And yes I am very low on iron and it is very dangerous to take any thing that has iron in it . I used to love liver that's out of my diet as are iron tablets. Because of low iron I have restless leg syndrome. If u do here's a tip. Schweppes tonic water, the tonic water that has quinine in it. Another one is mustard a tea spoon mixed with mayo helps soothe the symptoms. Apart from that I will be asking my doc for quinine tablets, I only discovered this recently. It's a nightmare. If I haven't been clear feel free to ask.
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