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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Dec 16, 2025 | Replies (338)

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@roughanne I too am starting to have neuropathy in my feet and it happens all day long. I have been on HU for 33 years and this has just started now that I am starting to convert to PV, otherwise have ET JAK2 mutation. Is the neuropathy a symptom of the PV? or the HU? I have a glass of wine about once a week, just to feel like I am enjoying life, but otherwise I know the alcohol is not good while taking HU. Recently just found out that I have LOW IRON. now diagnosed with Iron Deficiency Anemia, but my HCT and Red count are normal. (my PCP ordered it for me since my Hematologist does not do tests other than CBC. I started on 324mg of Ferrous Gluconate on M, W, F. anyone else have low iron? itneverstops. Leene

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Replies to "@roughanne I too am starting to have neuropathy in my feet and it happens all day..."

@leene808
I have a very good Hemo/Oncologist/researcher at University of Louisville Hospital. He says that iron supplements are not a good idea for us PV folks as they tend to stimulate RBC production… and undoes the work that the HU is doing. Your PCP won’t know that. So nail down your hematologist on that… don’t let him get away with not sharing information.