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My mom has PV

Blood Cancers & Disorders | Last Active: 4 days ago | Replies (11)

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@treeore

I remember the panic amongst my loved ones when I was diagnosed in 2022 with PV. Both HCT and platelets were high/very high, but I only did a few phlebotomies before stating medication (Besemi) in 2023. The blood letting did not feel bad, but I wanted a chance to alter the mutations that cause the blood production to malfunction. My medicine caused raised liver enzymes early on and I took a break from the interferon. Then I went back on at a much lower dose. Now I am on the lowest possible dose, injecting only once a month. Either the disease or the meds knock me out sometimes. I have a lot of insomnia and fatigue, and sometimes other side effects. But the medicines are working well at lower dose for the time being. As nightmarish as it is, we have to accept the trial and error method, while always questioning and being honest about quality of life issues. Best of luck to your family.

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Replies to "I remember the panic amongst my loved ones when I was diagnosed in 2022 with PV...."

Thank you
I think you are right - a bit of trial and error to find the balance.