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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 1 day ago | Replies (399)

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@brooks7987

My husband is 67, diagnosed past December. He started hydroxy a few months ago and hasn’t had any side effects yet (I was very worried about side effects). Also 1 80mg aspirin daily. The one change is applying sunscreen regularly and more sun shirts.
Still having phlebotomy to get hematocrit down but the hydroxy seems to help keep it stable and has reduced platelets to normal levels(which was needed).
He is still very active although some fatigue. We hope once phlebotomy stopped fatigue will lessen or even go away.

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Replies to "My husband is 67, diagnosed past December. He started hydroxy a few months ago and hasn’t..."

Hi, I’m taking the Hudroxyurea too. I noticed you said once Phlebotomy stopped? Sadly, this will be a life long therapy for those of us with PV. The meds lower numbers and decrease the amount of them needed but we will always have to get blood removed to keep our blood thin enough and prevent serious life threatening issues like blood clots, ulcers etc. I’m glad the meds are working for your husband and wish him continued good health!

Did not know about sun impact, I always lather it on being fair with blue eyes but will be super vigilant now. Are there any articles that point out the dangers of sun and PV? I know about extreme Temps either way should be avoided. I vacation often in Maine during the summer and it's cool enough for me to hang on the beach all day, I don't like heat much. Should I consider not being out there during peak sun hours? Maybe I'll post a question. Thanks very much for this info and hope your hubby finds his new norm quickly. I haven't found mine yet, diagnosed in April but I'm getting there. I was having weekly draws, then 2 weeks and we're trying a month now. No meds, just low dose aspirin.