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My mom has PV

Blood Cancers & Disorders | Last Active: 4 days ago | Replies (11)

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@tleona3024

Sorry - Polycythemia Vera

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Replies to "Sorry - Polycythemia Vera"

Hey, I’m 58 and this Jan will be two years since my diagnosis. It was scary. It takes about 7-8 months to get the dosage correct and they always begin with hydroxyurea because it has been around since the 1960’s. It doesn’t harm your organs. One baby aspirin also. I began with phlebotomies every week for six weeks and now am getting them about every ten weeks. I started taking the meds seven days a week and felt like crap. Tooth aches, high sensitivity to sun and just tired. I was told to hang on and let my body adjust. I did. Slowly I was reduced to five days a week after platelets dropped drastically. At about seven months I went to 3X a week and have been doing great at that dosage for almost a year and a half. My platelets began over
800 -now I stay between 450-490 which is acceptable. I get a phlebotomy once my hematocrit is 45 or higher which currently is about every 10 weeks. It’s a scary thing but can be managed and you can live for decades if you stay on top of it. Moral support is important. I wish your mom luck.