ET but feel great!

I had ET diagnosed in 2009 after routine blood tests revealed high platelets - and since I had had a heart attack in 2006 the consultant decided to prescribe Hydroxycarbamide. I have been with the same consultant these last 8 years and the only change has been the amount of this drug prescribed (usually higher doses). Platelets are under control and in the normal range but my consultant will not take me off the drug. I have no symptoms other than occasional itching after bathing/showers. (I am 67)

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  • Hello Michael,

    I have had ET for around 7 years, I'm now 45. I was put on hydroxy and aspirin from the start. I now take 1500mg mon-fri and 2000mg at the weekend. My dose was increased as my platelets kept rising. Once under control for a few months I asked my consultant if I could reduce the dose, to which he at first said let's wait for a while, eventually after keep asking he agreed and I went down to 1500 on the weekend too, so hardly any reduction really, or so I thought as to my annoyance on my next visit 3 months later my platelets had risen and I was put back on the old dose. Maybe that's what your Dr is afraid of. My platelets now stay between 400-500, sometimes creeping higher but never above 550.

    Good luck.

    Justin.

  • Original count? Original dose? Current count? Current doseage prescribed? Thanks, Mike.

  • Hello Jerry - count was over 800 in 2009 and the consultant prescribed 500mg per day (I was already on aspirin from my previous heart problem) - now my count is varying between 350 and 450 with a dose of 1000mg on five days of the week and 1500mg on the other two. Hope that info helps?

  • Hi Michael, I can understand that you would like to come off your Hydroxycarbamide, but they are controlling your levels so if you come off them your platelets will start to rise, maybe you could discuss with your haematologist a change of dose, to see if taking a few less each week will still keep the platelets at a good level. It's worth asking. Maz

  • Hi michael,

    I still feel good and I have had ET for 30 years and diagnosed properly and treated with Hu and aspirin for 20 , some of us get lucky others are not so fortunate.

    all the best Town Crier

  • Just like to know which mutation you have? Taking Hu and aspirin for longer period, any side effect?

  • I am Jak2 positive - been taking Hu and aspirin for nearly 8 years with no side effects.

  • Hi catkinspolymer, may I just ask which if any mutation you have? I'm sure you give such hope to people on here having ET for over 30 years.

    Michael, it is great that you're also doing well and truly inspirational. Keep taking the medication though it is 'our friend.' At the moment I tale 500mg hydroxycarbamide Monday to Friday and week-ends free. I'm sure at some stage this will increase though.

    Mary x

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