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is there an alternative to a vena section

Posted , 6 users are following.

tracy73193
tracy73193

Hi i have had several venasections over the last year my next appointment with the consultant is in february which is normally for about 3 minutes and very rushed as the dept is so understaffed and overworked.  I know life style changes have to be made, which i am trying to do, but have read that a low dosage of asperin could help. Any ideas

1 like, 21 replies

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  • geoff-mpnfamily
    geoff-mpnfamily tracy73193

    Posted

    Hi Tracy, I find 75 mg daily helps a lot, i buy Boots, Gastro-Resistant Tablets.

    As for alternative treatments your consultant would only consider this if either your other numbers are raised (White Cells and Platelets) or if you really are not coping very well with venesections. 

    As for details on the alternative Drugs avaliable, i am limited in my knoledge so i don't feel comfortable to share what i do know. 

    You can go to ' mpdvoice ' website, they have a wonderful amount of information avaliable to anyone. I have been to one of their Forums, where we all get together, and had an awesome time too. 

     

  • clem19079
    clem19079 tracy73193

    Posted

    There is an alternative to venisection, it's a drug called hydroxycarbamide, hydrea for short. It won't stop you visiting your consultant as this drug has its own issues. For me it hasn't ended the venisection but there are fewer of them. The effects of the drug on me are as follows, mouth ulcers, itching, I feel cold all the time. There are other issues with it. I was very dubious for along time about taking it and sometimes I'm sorry I started it as I feel the venesections would increase if I was to stop now. You can ask if it's available to you then do a bit of research as to whether or not you want it. I also go to see my consultant on a regular basis. Don't take the short visits to heart as my last appointment last about 30 seconds. If there are issues you will hear about them. It may feel like a lot of hassle for a few minute appointment but it has to be done.
    • paul4670
      paul4670 clem19079

      Posted

      i fully agree Clem, i have been on hydrea a while now and it can knock you around a fair bit, but i would advise against reducing the dose or stopping and re-starting it, I recently did this myself so as i could have a minor operation and the side effects are worse second time around.

      But the good side of the medication is it has helped me with reduction in splenomegaly and portal hypertension which were both side effects of my PRV, plus reduced requirements for venesections, one thing i will warn about is scaring of the vein they use, not sure of the needles used over seas but here in australia they use a huge needle for them and now i have scaring of the vein

       

    • clem19079
      clem19079 paul4670

      Posted

      I don't call them needles, their javelins. I thought hydrea caused restless leg syndrome, it doesn't ( least I can't find evidence for it) I tortured with it. I was thinking if I did stop taking it my blood would go haywire.
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