Platelets rising whilst on hydroxycarbamide?

Does anyone have any experience of their platelets rising whilst on a relatively high (1.5g) daily dose of hydroxycarbamide?

If so which alternative drug did you go for, & how do you feel (tolerate) it?

I suspect I will plump for interferon b (analagride SE's don't sound very nice)?

Any help advice would be appreciated

Bill

7 Replies

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  • Hi Bill, yes my platelets often have risen on Hydroxy, worst time they got to over 2,000. My haematologist increases the dose and they come down, then creep up again, most I have taken is 2g per day every day and that brought it down. Currently taking 1g four days per week and 1.5 the other three days as they had crept back up to 500 on 1.5 two days per week and 1g the other days. Will find out Monday if it's worked. My haematologist did say Interferon is an alternative if we can't get the Hydroxy to work but he prefers to try "tweeking" with Hydroxy first to try and control things. I am Jak2 positive MPN non classified. Good luck, Frances.

  • Hi Bill. I have had the same problem as you with increase in platelet count whilst taking hydroxycarbomide. My dose was increased to 2mg a day and my results 2 weeks ago showed a significant drop. I will stick with this for now, though my fatigue is horrendous. Interferon is a possible choice for the future as I can't tolerate anagrelide. Good luck with whatever you decide.

  • Thanks for you reply Helen. I'm hoping that I'm fit enough to cope. I have never had SE's from hydroxycarbamide, & still manage to cycle over 100 miles per week. Fingers crossed for 2 g?? 👌

  • I have ET, and have been on Hydroxycarbamide for nearly 3 years. My platelets came right down and were stable for quite a while, however they are climbing again now. I take 2 x 500 g Monday to Friday and 3 x 500g Saturday and Sunday. I go back on the 30th and if they're up again they are going to review my medication but didn't say what! 😳 I'll post what they say. I've got a bit of a cold at the moment so hope that's gone and they've come down again. Seems our bone marrow/platelets have a mind of their own. 😬

    Best wishes

    Lizzie

  • Hi Bill. I spent about 19 years on HU and had many fluctuations in platelet count and thus dose of HU. I could not tolerate anagrelide and I have a mental block about interferon! Despite the fluctuations the overall trend in those years was a rising dose of HU to keep plt count below 1000- more usually around 700-800 and I was on 2mg per day before I switched to Ruxolitinib as my ET had progressed to MF. My platelet count is now around 60 - 70 (not 6-7 hundred!) so it is novel to think after all those years I now have a LOW platelet count. People here have shown success with all those different drugs so in the end it boils down to personal choice and informed decision and discussion with your Haematologist.

    Best wishes

    Jan

  • Hi Bill I was on HU but 1 x 500mg a day my platelets started to rise and increase in HU not possible due to Sideroblastic Aneamia in December my Heam moved me over to Anagrelide (I was not very Happy) I take 4 a day of Anagrelide and so far touch wood have had no side effects and have had days were I have had more energy, was only on HU for 9 months but during that time I had to keep having blood transfusions as it reduced my HG really low.

    I guess we are all different and for Anagrelide is working my platelets are staying down and my HG is staying up so for me it has been a good change.

    Caz xx

  • Thanks for the reply Caz

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