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JAK2 Mutation, Low Iron and High Platelet count
Blood Cancers & Disorders | Last Active: May 24, 2021 | Replies (68)Comment receiving replies
@damari, were you not able to get an answer from your doctor regarding iron supplementation and its possible affect on EPO value? I know you are quite worried and think you need to keep asking your doctors questions until you feel confident in the care and understand your condition of PV or ET better.
In the meantime, I wonder if @mjpm2406 @stevehurlburt @pattitoo @helen2209 @levieta @trillium might have more info for you.
Damari, when do you see your doctor again?
Replies to "@damari, were you not able to get an answer from your doctor regarding iron supplementation and..."
Sorry, I am not aware of EPO. I was originally on Hydroxiria but developed so many “ rare” side effects. Dr wanted me on Jakafi, but I consulted with Dr Palmer @Mayo and we moved to Pegysus. After two months this seems to be working better. I also added a B-12 supplement recently. Wish I had more insight. The only difference between ET and PV has to do with scarring. ET is manageable by pill..PV requires more bone marrow biopsies to monitor scarring.
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Thank you for your response. So far, I have not gotten an answer. He will repeat the test in 4 weeks and look at all the rbc values. I still hope someone can answer my question of the iron supplementation before that. New Question: My doctor did a test BNP I was diagnosed in March of 2020 with afib. I am on metoprolol and eliquis. My score one year ago was 58 and now it is 133. He said this is NOT a worry. Can these values fluctuate? Since the afib episodes have happened approximately 2 times a month, he thought this is the reason. His suggestion is to let the cardiologist know. What info can you share?