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polycythemia vera and malaise

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DonaldLV
DonaldLV

I was misdiagnosed with essential thrombocytosis in January 2011.  I was put on 1500 mgs of hydroxyurea per day until May 2012 when it was discovered that I had been misdiagnosed.  I was re-diagnosed with polycythemia vera.  I was immediately taken off the hydroxyurea.  From shortly after the time I began taking the hydroxyurea I began experiencing malaise.  To date, I continue to experience malaise.  I've had every test imaginable to find a reason for the malaise.  None have been found.  I continue to experience malaise.  Through the protestations of my family physician, my oncologist/hematologist, my wife and a host of other health care people, I believe that the hydroxyurea contaminated my body, and thus, the reason for the continuing malaise.  I would welcome comments, suggestions and/or questions about how to treat the malaise so that I can either control it or get rid of it.  It is very debilitating and challenged my quality of life every day. 

0 likes, 22 replies

22 Replies

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  • kaya35376
    kaya35376 DonaldLV

    Posted

    HI DonaldLV

    There is an heamotoligst in st thomas hospital she is also the head of haemotology department, i last time took her 2nd openion and that was accurate, thank god.

    you can also email her about your situation her email address is 

    Claire.Harrison@gstt.nhs.uk

    hope this will be helpful instead of getting wrong information from unprofessional people, 

    get well soon donald

    Mohammad

    • DonaldLV
      DonaldLV kaya35376

      Posted

      Thank you for the tip, Mohammad.  I live in the United States and have finally found the source of my malady.  It is being treated and I'm feeling much better.  Your suggestions about getting second opinions is good.  Everyone should do it.

      Take care,

      Don

  • billi
    billi DonaldLV

    Posted

    Hi Donald,

    Do you mind sharing with us the source of your malaise that you found out about? I have been on Hydroxyurea ever since I was diagnosed with PV. I have been experiencing malaise but my doctor isn't able to find why.

    Thanks!

     

  • harrishill1
    harrishill1 DonaldLV

    Posted

    Hi bili and Donald V. Just want to mention that all of us withPV have feelings of malaise,(tiredness). If one isn;t feeling well, they get tired, and need naps now and then. Also, when we are on Hydroxyurea, our blood sometimes gets a little low. WE can be lacking certain vitamins. But in order to keep the blood from getting too high, we have to not worry about it. I do take a one a day vitamin,

    but if I get tired, usually around noon, i lay down or take an hour nap. Problem solved. My CBC blood test usually shows which vitamins I am low on. My GP gets a copy of my cbC and shows it to me.

    harrishill

  • lijuan7002
    lijuan7002 DonaldLV

    Posted

    Hi! You can view the latest med information about PV  from the Dr. Richard T. Silver research.

    The 1st Annual International Symposium on Myeloprolifertive Neoplasms

    Saturday, Jan 9th, 2016

    "Is Polycythemia Vera Curable?"

    In his study, I think the PV is curable in the future.

    Best wishes and be well.

     

  • harrishill1
    harrishill1 DonaldLV

    Posted

    Hi DonaldV. Yes, I've also heard that PV may be cured in the future, using gene therapy. However, we can still live a fairly normal life span with pv. That is, if we don't have too many complications. As I am, I've been diagnosed for four yrs now, and I still work around the house and yard like I did before. I still work out at curves, go for walks, etc. I have rheumatoid arthritis, and I really hate that it affects my feet and hands. I don't take the arthritis drugs because they have too many side effects. I see my haematologist regularly, and he is very good.

    universes1

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