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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 2 hours ago | Replies (400)

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@nypara66

Hello I’m new to PV also. Recently diagnosed in January this year. Are you getting phlebotomies as well? You had t mentioned that. I have t reached any sort of normalcy yet. Hoping the Hydroxyurea stables it out. I’m taking 5 days on 2 off. My platelets stemmed to drop nicely but suddenly jumped back up so I was told to give it time. I had just recovered from a nasty COVID experience so I’m hoping that had something to do with it. Glad you are well!

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Replies to "Hello I’m new to PV also. Recently diagnosed in January this year. Are you getting phlebotomies..."

Hello NYpar66 (New York?), I am just in the infancy of all this, and I too had covid in the past 6 weeks (took me 3 weeks to get back to feeling like myself again). I have one more test before my journey begins, though I have all the symptoms and we are moving forward with the 'diagnosis' of polycythemia. I'm scared, my husband isn't overly supportive and is responding as pretty clueless. I had a horrble dizzy event a couple of weeks ago that has never happened to me before. I appreciate your contacting me and look forward to hearing from you and learning your progress! Carol in New Mexico

Very similar story here. About one and a half years since diagnosis. Started with daily hydrox. and phlebotomies every two weeks. Now down to phlebitomies every 3 or 4 months and hydrox 4x week. My doc uses that dosage based on hemoglobin and platelet levels. So far, no problems or side effects.