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Polycythemia Vera: Just been diagnosed

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

I was diagnosed just about a year ago with PV. Been on Hydrea since May. My RBC,WBC & platelets were all extremely high. Numbers are now within range and except for always being tired & needing meds to sleep I feel pretty good. Did test positive for JAK2. See my oncologist every 3 months for bloodwork.
So at 76 yrs actually just hope I continue the way I am.😊

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Replies to "I was diagnosed just about a year ago with PV. Been on Hydrea since May. My..."
Lori, Volunteer Mentor | @loribmt | Apr 13, 2023

Hi @anitarose, Welcome to Connect! Thank you for sharing your experience with PV. We often only hear the negative stories so it’s great that you’re doing pretty well on the Hydrea. It’s keeping your numbers even and that’s the goal.

Another positive is only needing bloodwork every 3 months. I felt liberated when my leash was lengthen to 3 month intervals. That meant my oncologist was seeing a predictable pattern and not anticipating anything out of the ordinary. So that’s a good indication that your meds are working.

Do you take Hydrea daily or every other day?

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nypara66 | @nypara66 | Apr 14, 2023

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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