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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: Dec 16 1:26pm | Replies (400)Comment receiving replies
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?
Replies to "Hi @treeore Besremi interferon isn’t classified as an immunosuppresant but it’s intended to work by reducing..."
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Hi Lori, Besremi did the trick on HCT and more than halved my Platelets in 6 injections; however, my liver enzymes were elevated and the doctor took me off it. (The side effects were not happy, but I would have forged on if not for the liver.) Now after more than a month off Besremi, my platelets are rising again. The clinic and Medicare, to boot, have not been able to agree on paying for Besremi, which has reached about $120,000 in cost. The clinic wanted to inject me until my dose stabilized; Medicare says patients MUST self inject. I am of course lost in the middle of this, with no written assurances that I am not "broke". My local hema/onc doc just says: people your age (65) usually just take chemo (HU), but I do not want it. I will talk to the Mayo doc I saw on zoom in December, to see what else I might do as the blood counts begin to go haywire again. I've tried some Chinese herbs for liver detox; taking some milk thistle seed tea occasionally too. Daily aspirin 'natch.
I've ordered a SUP board for summer "coping skills" and a sun protective shirt. I'll either drown or have fun, I figure. (Don't worry, I'll wear a life vest!)