← Return to Polycythemia Vera or Essential Thrombocythemia ?

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@nypara66

Hi Brad, Of course I’m not a doctor but that seems like an awfully high dosage to start the hydroxyurea on. When first diagnosed with PV, my platelets were 800. I was put on 500 mg daily. After two months, lowered to 5X a week. It takes about 6-8 months to get the dosage correct. I’m aware that they can to-yo it throughout your lifetime depending on your labs. I’m currently taking it just 3X a week . My red cells remain high but they aren’t too concerned with that as long as my platelets are 600 or under, hematocrit doesn’t go over 45 and white cells stay reasonable. I am 57 and diagnosed with PV one year ago this month. Hang in there!

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Replies to "Hi Brad, Of course I’m not a doctor but that seems like an awfully high dosage..."

I have had PV for 14 years. I have been taking 1000 mg daily since then. My platelets are around 409 and my hemoglobin fluctuates. When it gets to 44 to 45 I get a phlebotomy.

I suspect the doc started her on a high level of HU because her platelets were so high. My heme-onc told me the danger zone is over 1000 level of platelets - that's when there is a much higher incident of heart attack, stroke, pulmonary embolism - all of which can kill you. Looks like the high does did the trick since her platelets came down to 308 - within normal limits! Hopefully her doctor will reduce the dosage now that she is out of immediate danger. 🙂