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Hematocrit Continues to Drop After Stopping Hydroxyurea

Blood Cancers & Disorders | Last Active: Apr 15, 2023 | Replies (8)
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@flynnconn

I was started on HU in November to lower platelets, but have experienced extreme fatigue, shortness of breath. Mouth sores and hair loss. I’m 83 and in otherwise decent health. I want to stop HU. Dosage has been 500mg daily. Platelets dropped from 612 in November to 270 now. Had bone marrow biopsy and the diagnosis went from ET to prefibriotic myelofibrosis Dr doesn’t want me to stop HU. But I agreed to do 3 times a week to see what happens. The side effects are bad for my everyday life.

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Replies to "I was started on HU in November to lower platelets, but have experienced extreme fatigue, shortness..."
flynnconn | @flynnconn | Apr 10, 2023

PS Just noticed my previous comment has been moved here. I really don’t want to keep taking HU. Is this foolhardy? For some reason my dr wants me to continue. And before I insisted and made a fuss he didn’t even want to monitor monthly. He scheduled me for 3 months!! I feel very unsure about what is happening to me. He told me not to read anything on internet and just forget about everything and not worry??!!?? Result: I’m very unhappy about everything to do with my diagnosis

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