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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)

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@nypara66

It will take about 6 months or so to figure out some sort of routine. Once they get your numbers where they like them, platelets, hemoglobin and hematocrit, you will feel much better and not go in so often. I’m at six months in from diagnosis. Had 6 phlebotomies, once weekly, then every month and now it was 9 weeks. Hoping to get it to every 3-4 months. I take Hydroxyurea 3X a week which is a low dose. They will be playing with that dosage indefinitely until some sort of normalcy with your numbers. My hemoglobin stands at about 14 now? Was 22 in January. Hematocrit must be at 45 or under to be safe. Mine was 62 at the start. Over that it’s time for a phlebotomy. Platelets, my doctor says under 600 is acceptable although the lab standards say up to 450? So for the first time I’m steady at 470 for six weeks. I was 777 in January and have been yoyoing, so stressful! I do feel better and am hopeful it’s finally leveling out. Hang in there!

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Replies to "It will take about 6 months or so to figure out some sort of routine. Once..."

It was tough at first I experienced the same thing when I first started my blood count was at 67 I felt sick as a dog my blood was very thick but we made it we're down to 40 on my blood count thank the Lord I was put on Jackifi because the other was not slowing my blood down and also I am on eliquis as a blood thinner 10 mg twice a day