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DiscussionPolycythemia Vera: Just been diagnosed
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Replies to "I take jakafi to keep my blood under control I never have to take blood transfusion..."
I also am taking Jakafi. It helps immensely with PV side effects however I still need a phlebotomy every couple months. My hematocrit is kept at 42 or below.
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!