I have erythrocytosis
My ferritin is very low due to the phlybotomies
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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.
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.
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.
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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.
After covid vaccine, my hemoglobin would not come back up despite oral iron and 5 iron infusions. I had been off and on oral iron for about 10 years and it always worked before vaccine. I have now been diagnosed with Waldenstrom’s. Did vaccine cause Hemoglobin to not come back up?
Sorry to hear of your health diagnoses. Have you joined this thread? "Iron Depletion in Blood related to COVID?" – might have some help to you.
Also, I have seen somewhere in the thread “Low Platelets: Diagnosis to be confirmed” a medical provider talking about a prescription “Rituxan” that keeps b cells from attacking your body. Maybe something to run by your doctor for a potential treatment option?
Hope you get some answers soon and feel better!
Side note – supplemental oral iron worked for me prior to COVID when my iron was lower (not clinically low) and it no longer seems to work. IV iron did work for me after 5 rounds but only time will tell if it stays up. RDW values are still abnormal though (and even worse after IV iron) and awaiting follow up on why that is.
Have you had a COVID vaccination or tested positive for COVID in the last 6 months? My ferritin plummeted after vaccination. IV Iron so far seems to be the solution with hematologist – see this thread about sudden Anemia and low Ferritin after vaccination "Iron Depletion in Blood related to COVID?" PS – OTC and perscription Iron supplements did not help so IV iron was only option.
No. It is from the phlebotomies.
Yes. My ferritin count has gone from 171 to 12
Yes, I have PV so I take a gentle iron pill (Solgar 25MG) once a week, it works.
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