Same situation @rmegg . I know you get your CBC panel with Diff & Ferritin test before your phlebotomies so just ask your PCP if they can add or recommend iron supplements as an RX e.g. Ferrous Sulfate.
Hi, @rmegg! I have the exact same problem as i am also diagnosed with idiopathic erythrocytosis and can’t take iron due to the fact that it makes my hemoglobin spike. My ferritin is currently 10.5 and i can’t find a solution. Have you been able to find anything? Hope you’re feeling better.
Hi
I have not found a solution. There is a drug that is called rusfertide (PTG-300) that is in clinical trial.
It reverses iron deficiency and the need for phlebotomies. It sounds too good!!
Release is a long way off. It has been approved to stage2.
I wish you luck and will let you know if I learn anything else.
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I tried iron pill daily and ended up with an emergency phlebotomy.
My hemoglobin shot up and I got a migraine.
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1 ReactionHi, @rmegg! I have the exact same problem as i am also diagnosed with idiopathic erythrocytosis and can’t take iron due to the fact that it makes my hemoglobin spike. My ferritin is currently 10.5 and i can’t find a solution. Have you been able to find anything? Hope you’re feeling better.
Hi
I have not found a solution. There is a drug that is called rusfertide (PTG-300) that is in clinical trial.
It reverses iron deficiency and the need for phlebotomies. It sounds too good!!
Release is a long way off. It has been approved to stage2.
I wish you luck and will let you know if I learn anything else.