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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Dec 16 1:26pm | Replies (400)

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@treeore

I'm thinking about the response above of @loribmt, and wanted to pipe in that the interferon I'm taking for ET/PV does not seem to caution against sun exposure. I see it referred to as immunotherapy instead of immunosuppressant-- is that an explanation of the difference?

I have just started treatment recently, Besremi injections and several phlebotomies. The last phlebotomy was a bit dramatic, as the needle shot out of my arm mid draw. My platelets are very high, and the blood withdrawal is barely able to keep Hematocrit levels near normal; all these signs are frightening, but I am playing a waiting game now, hoping treatment will produce results before any clotting or stroke happens. I'd like to learn more about supplements (beyond aspirin) to prevent strokes, but for now I'm relying on Qi Gong exercises and breathing exercises to ease the psychological stress and very likely physical resistance in my veins/arteries.

Health to all of you!

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Replies to "I'm thinking about the response above of @loribmt, and wanted to pipe in that the interferon..."

Hi @treeore Besremi interferon isn’t classified as an immunosuppresant but it’s intended to work by reducing the amount of blood cells produced in the bone marrow. However, that’s not exclusive to red blood cells. White blood cells and platelets are all products of the blood manufacturing proccess. By potentially lowering your white blood count, that means there’s a hit to the immune system, making it less robust. So you still should take precautions in the sun by limiting exposure, using sunscreen and wearing protective clothing.

You sound like you have some wonderful coping skills for keeping the stress level in check. Let us know how the Besremi injections work for you.
Are you taking daily aspirin?