Effectiveness of HU on ET w/MPL?

Posted by johnnychips @johnnychips, 2 days ago

I was diagnosed with ET & MPL 2 months ago, platelet count of 850 and the doctor started me on HU 500mg, 3 pills a week (M, W, F). After one month, platelet count was 716, so he increased dosage to 7 pills a week (one each day). Two weeks later, platelet count was 699, so he increased dosage to 11 pills a week (two each day, except M/W/F with only one). Three weeks later, platelet count was 675, so he increased dosage to 14 pills a week (two each day). That brings us to the present. So, after two months altogether from the start of the diagnosis, platelet count went from 850 to 675. I became discouraged as I thought HU would bring the platelet count lower and faster. It is going in the right direction but it is still high.What realistically should my expectations be? What is everyone else's experience in terms of the amount of time it took to get the count to less than 400? Would appreciate some feedback on this. Thanks!

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Profile picture for mdramsey48 @mdramsey48

@johnnychips I was dx with breast cancer a month after being dx with Jak2ET. I had radiation in March so no sun on my left arm and torso for at least 6 mos. I have a convertible Mustang btw and we just bought a boat last summer. I started using Blue Lizard sun screen and I don’t even have to wear clothing over it, it works so good. I was on HU for a little over a month but couldn’t tolerate it. Starting a anagrelide today. Good luck!

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@mdramsey48 Thanks for the feedback. Good luck with the anagrelide journey, hopefully that would suit you best with less side effects.

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Profile picture for krag1949 @krag1949

Don’t know if this helps I was diagnosed in Nov 2025. I take 2 HU one day and 3 HU the next day. Alternating doses ! My platelet count 306 and white blood count 5.3. Maybe this helps

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@krag1949 What was your platelet count when you began with HU?

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