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Rising ferritin level

Home forums Patient Message Board Rising ferritin level

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This topic contains 2 replies, has 2 voices, and was last updated by  Kathy Stermer 1 week, 5 days ago.

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    Kathy Stermer

    Have been transfusion dependent since December and currently have had 23 units of blood so far. As a unit of blood contains many more times the amount of iron the body can process and has no way of getting rid of it without treatment am wondering if anyone else has feedback on drug used to treat this. My level now a tich over 1000 (I think 300 high end of normal) and I’m holding off on taking yet another drug at this point. They tell me the GI side effects can be not well tolerated. I can still function with my hgb in the 7’s which is where I’ve been hanging but just wondering if anyone else dealing with this


    Amy Clark

    Hi Kathy,
    My husband was diagnosed with MDS in August of 2018. His hgb was hanging in the 8s. His ferritin level hit 1800 in Feb. 2019, then he had four more units of blood to total 25 before they started him on Jadenu in March. On average his ferritin would go up 85 points with each unit, so he was likely over 2000 when they started the Jadenu. He had a some side effects on Jadenu like nausea and upset stomach, but he hung on with it in hopes of lowering the ferritin level. However, his liver enzymes went high (ALT 160), so they stopped the drug. Then he started reading up on high ferritin levels and found an article that talked about turmeric lowering ferritin levels of those with hemochromatosis. He decided it was worth a shot for someone with mds and after two months of turmeric his ferritin was 1200. We were very surprised! I have no other info than this. Hope something works for you. I will pray for you too. Amy


    Kathy Stermer

    Thanks for the info Amy! Always looking for natural ways to treat vs more drugs and have heard the GI side effects can be brutal.

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