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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Mar 20 8:31am | Replies (392)

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@robinll

Hay, you sound like me 3 years ago when I was diagnosed with PV. I eat healthy, I'm slender, do regular exercise and take whole lot of supplements and vitamins but after two and a half years, with a biweekly phlebotomy, baby aspirin and POSITIVE THINKING, my red blood count was 2057, safe range is 120-400. I was heavily fatigued, had frequent stomach upsets and painful circulation problems, so I broke down and started taking hydroxyurea every night. I have regained my energy and now after 8 months my blood count is a bit over 900. As soon as it hits 500 I plan to take the hydro pill only 4 nights a week. I hate it, call it the poison pill, (PP) but it has helped with no side effects that I can tell. I suggest you relent and not let your platelets get out of control. Robin in NY State but I grew up in Southern California. So, Howdy!

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Replies to "Hay, you sound like me 3 years ago when I was diagnosed with PV. I eat..."

Hello Robin in NY but grew up in S. CA! So good to hear from you. I have soooo many of the symptoms, though major fatigue isn't one of them. I've always been a go-getter and a hit-the-floor-running kind of girl. Though I will say my longevity isn't like it used to be. Hopefully I will know more in the next few weeks. Looking forward to more conversations. Carol in New Mexico