Worried about HU dosage

I have ET and am on Hydroxycarbamide - 1000 mg per day for 5 days and 1500 mg per day for 2 days. I've been to the hospital today and my count was down again, to 280 from 370 six weeks ago. I've been told to stay on that dosage and go back in 10 weeks, however, I am worried that the counts will continue going downwards and go too far the other way, when I mentioned this the specialist nurse said that would not happen. But my levels have gone down each time since I have been on this dosage, (originally they were about 1160) am I wrong to be worried that my platelet levels will fall too far?

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6 Replies

  • Hi Lizziep

    I don't think you are wrong to be concerned you know your own body. If it was me I would be inclined to go for a blood test every couple of weeks just to keep an eye on the counts. I think a lot can happen in 10 weeks. My Consultant provided me with a handful of blood envelopes which anytime I feel concerned I can go along to the blood clinic have a test and ring his secretary for my results. It gives me peace of mind. I too have ET and was very symptomatic when I was diagnosed, the slightest rise in my platelets causes me symptoms and usually this is when I get my blood checked, and tweak my HU. Its your body don't be afraid to insist on regular checks until your platelets have levelled.

    Take care :)

  • Thanks for taking time to reply Mallard! I'm thinking of asking for a test in about 4 weeks if I feel any different to what I do now. Kind Regards.

  • Hi Lizziep, I have had a word with Prof Harrison for you and she has said that : Eventually the blood count will stabilise and it looks likely to occur soon. Scientifically the difference between the two readings is quite small even if it fell the same amount or even more, it would still be well within the normal range. The team are gauging this probably on the rate of fall and time between appointments. I hope this helps. Kind regards, Maz.

  • Thank you for taking the time to do that! I feel a bit better about it now, I'll just see how I feel in a few weeks, if there were any significant changes I'd contact the hospital. Thanks again.

  • Hi just thought I would reassure you . I am on exactly the same amount of Hu as yourself and have been for almost 11 years now . Originally my count was around 960 but has been constant for years now at around 240, sometimes a little less. Don't worry too much the Hu is doing its job!

  • Thank you for taking the time to reply Millycat. I've felt alot better about the HU since discovering this site. The fact that you are on that dose has reassured me. Kind Regards.

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