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Newly diagnosed with Essential Thrombocythaemia

Posted , 4 users are following.

Kizzi423
Kizzi423

I have just been diagnosed with Essential Thrombocythaemia and have to start on Hydroxycarbamide. Has anyone any experience of taking this drug and have you had any side effects? 

1 like, 4 replies

4 Replies

  • patrick37242
    patrick37242 Kizzi423

    Posted

    Hi kizzi,

    I've been taking hydroxycarbamide for 4 years, 1000/500mg alternate days with very little side effects. Some fatigue but whether that's from the drugs or the disease is open to plenty of debate! Dry skin occasionally. Your haemotologist will work out what strength is best for you to keep your platelets under control. It's very important to keep well hydrated, always have a bottle of water to hand. Hopefully you don't have too many problems with it, I know by looking online some people can tolerate it better than others.

    I'm no expert about our disease but I hope I've helped you a little.

    Take care now

    Pat

    • Kizzi423
      Kizzi423 patrick37242

      Posted

      Thank you. I have been on it for a while now with no side effects - due to see haemo today so we'll see if it has made a difference.
  • Nordic
    Nordic Kizzi423

    Posted

    Hi, I was diagnosed with ET in the summer, & have just found this site to chat with other sufferers.  I am taking hydroxy - how is it going for you?  What level are your platelets now?
    • Kizzi423
      Kizzi423 Nordic

      Posted

      Hi. It's all going very well. I now take 500mg Hydroxycarbamide for 6 days a week and 1000mg on 1 day. Platelets are now 433 so really good. No side effects from the drugs at all. There is also a very good Facebook page for ET - people from all over the world have joined. Hope it goes well for you.
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