unhappy with treatment

I have polycythemia vera. I think I am on the wrong treatment as my dosage of Hydrea is very low ie 500mg once a day twice a week, when the normal dose seems to be 1000mg daily. My hct is over 47 but the consultant is not interested - thinks I am dehydrated and she is unapproachable. What can I do? Can I get a second opinion? Should I go private? I have been put on a 3/12 nurse clinicwith blood results by phone as I am deemed stable. I am over 80 and fear a blood clot as I also have a pacemaker. What can I do?

  • Hello and thanks for your enquiry,

    I am sorry to hear that you have concerns about your treatment. You could speak with your GP about this. They may be able to comment, and advise you.

    Drug dosages are sometimes reduced due to age related issues such as reduced kidney or liver function. So maybe enquire if this is the case for you.

    There may be a hospital haematology clinical nurse specialist (CNS), that you could contact via the hospital switchboard.

    Your GP may be able to sort this out, or if there is a way of obtaining a second medical opinion with another NHS consultant. Otherwise it would mean paying for a private consultation with a private haematologist. You can also raise your concerns with the hospital patient advice and liason service (PALS) who can find out more for you.

    I hope this helps,

    Best wishes,

    Vanda