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Hello I'm new to this, I was diagnosed last month with ET routine blood test, consultant started me on hydroxyamide unfortunately was only on it for 3 weeks I had bad side effects. After 2 weeks of being off medication, saw consultant yesterday and I'm on anagrelide and aspirin. Consultant said take anagrelide for few days then commence aspirin that way if one tablet is disagreeing with me we're know which one it is.

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  • Hi Linphy, welcome to the forum, we are already in touch with each other, so I will leave it to the lovely people on the forum to reply to you with their words of wisdom. Best wishes, Maz

  • Hi linphy,

    Glad you joined us, I am sure you will get more support here than from the leukaemia site as we are all in the same boat. Maz can also ask questions if needed of professor Clare Harrison at Guys who is the expert on our MPN's

    I have PV . Diagnosed 11 years ago and have been on Hydroxy for the last 3 years. I tolerate it very well and have no side effects from it. I do get tired but have learned to pace myself. I hope you manage to get medication that agrees with you.

    Very best wishes

    Judy

  • Hi Linphy, welcome to the forum, just to say hope Andrelide works for you and that the side effect from Hydroxy becomes a memory.

    I have ET, and take Hydroxy, and enteric coated aspirin, been the last four years and so far so good, I know what it is like to suffer side effects from drugs, there are not many I can tolorate, so was surprised that I could in fact get on with this one, but like a lot of people on here we are all different in as much as to which drug agrees with us.

    Keep us informed as to how you are getting on, and I am sure that if you have any problems, there will be someone on here who can give some words of wisdom, and even if you just feel like a rant, talk to us as we are all in the same boat more or less.

    So welcome to MPN Voice.

    Jean x

  • I take Anagrelide, I got quite a few palpitations at first but they have faded and now I get them occasionally. I also take aspirin. Hope all goes well for you.

    Best Wishes

    Lizzie

  • Hello Lizzie, how long have you been on anagrelide howoften do you see consultant. I started anagrelide thursday, but have had a headache since, no palpitations. I start aspirin monday

    Best wishes

    Lin

  • I started on it at the end of August, after 3 years on hydroxy, my platelet levels went up at first, the dose has been altered a couple of times, they had come down last time I went, 6 weeks ago, I go back to the hospital on Wednesday.

    Hope all goes well for you. X

  • Hope it goes OK let me know x

  • Hi Lizzie how are you, howdid your last appointment go. Ive seen consultant couple of times since i last message, consultant cut my Anagrelide down to 1 a day with asiprin. But my diverticulitis has flared up knocking my platelets ups. When i commenced anagrelide consultant said it wouldn't interfere with my stomach, but my gp said it would.

    Lin x

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