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harrishill

Posted , 4 users are following.

harrishill1
harrishill1

Hi everyonewith  Polycythemia Vera. JUST reading someof  the recent comments about alternatives to venesection, I have to comment. I've read a lot on the treatments used. Venesections are fine for a while, but usually it's best for the hematologist to prescribe meds eventually. Also, aspirin is just prescribed besides other meds to prevent blood clots which are a danger with PV. Another thing, the hematologist shd be the one to prescribe the meds. I take Hydroxyurea, and haven't had a problem with it  My blood is down to normal right now.  I get a couple of hours of exercisee ach day, and am 73 yrs old. Have been diagnosed for three years.  Just remember, that if you are prescribed two capsuls per day, take one in AM and one in evening, ratherth an taking two at once,`

If you hate venesections talk to the hematologist and see if he/she can prescribe meds. Best wishes to all

 

1 like, 6 replies

6 Replies

  • nandrews
    nandrews harrishill1

    Posted

    Harrishill,

    Interested in your comment about taking Hydrea in separate doses.

    I am taking two a day (3 a day Sat/Sun) and have always taken them at once. Tho' It was suggested I take them at night instead of in the morning.

    What reason would you separate the doses?

    Thanks

    Nigel

     

  • harrishill1
    harrishill1

    Posted

    Hi nandrews. I was taking two at once, then read on my prescription that I shd have been taking one AM and one in the evening. I realized that that had been keeping the meds from working as well as intended. I f you aren't sure, ask your hematologist. It did seem to help, and now my blood is in perfect control.

    Harrishill 

  • nandrews
    nandrews harrishill1

    Posted

    Thanks,

    I have rechecked my prescription and it doesn't specify when or how to take the daily dose. But I will certainly mention it at my next consultation in two weeks.

    Thanks

    Nigel

     

  • gary_14791
    gary_14791 harrishill1

    Posted

    Hi

    i am recently diagnosed with pv with the jake 2 gene, I have had 3 venesection but no meds apart from asprin would I be better off on meds also get very tired and breathless is this a symptom of pv and  I have a painful joins on my left arm and right big toe, really finding it all very hard thanks 

    Gary

    • geoff-mpnfamily
      geoff-mpnfamily gary_14791

      Posted

      Hi Gary, it's me again lol, sorry to hear your suffering so much, some of the symptoms will ease a fair bit as your bloods thin out, those pains you are describing sound like gout, which is very common in PV, it's caused by anow over active build up of uric acid. You can go to your GP about this, and treatment might be offered for this. Alternatively you could speed to your haematologist about it, they will know all about the gout and PV.

      The breathlessness is unfortunately another symptom of very thick blood. This should ease a bit as your bloods are thinned too.

  • harrishill1
    harrishill1

    Posted

    Hi again, about when to take the pills, once or twice a day, I think was explained on the paper that comes in the bag along with the bottle when I pick up my meds. However, when I may have a question, I have called the hematologist's office and the receptionist will ask the question and get back to me. Hope this helps everyone.

    harrishill

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