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iron overload, nonhereditary or transfusion related

Home Demo forums Patient Message Board iron overload, nonhereditary or transfusion related

Viewing 4 posts - 1 through 4 (of 4 total)
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    Philip Fallacaro

    81 years old developed low risk MDS in 2016. Started procrit injections every two to three weeks about 3 years ago. It was keeping my hemoglobin around 10.5, whites cells near low normal and platelets near low normal. Unexpectedly two years ago I was hospitalized for extreme weakness, weight loss and fatigue and found to have Adrenal Insufficiency (adrenal glands not producing cortisol) requiring modest dosage of 25mg hydrocortisone for cortisol replacement. Was doing ok for a while but tested having high serum iron, high ferritin and high saturation levels, iron detected in my liver, but not causing damage. My platelets dropped from around 120 to 75 +- 10. Concerned about the toxic effects of iron over load, my doctor prescribed chelating pills, Jadenu (deferaserox) to reduce iron absorption. But I cant seem to tolerate this iron Chelating drug, which has serious side effects.
    Has anyone with MDS and anemia having issues with IRON OVERLOAD, and how are you dealing with it medically?

    Sherry Pratt

    Hi Phil, Sherry Pratt here. I too had side effects from chelating drugs. I now take Lactoferrin. It was recommended by my naturopath at my treatment center. It brings the iron level down slowly but surely with no adverse effects.

    I get them from Life Extension on line.

    Philip Fallacaro

    I just noticed your response on my laptop mail account. I don’t get it on my iPhone anymore and can’t fix it. Anyway I was happy to get the info regarding recuction of iron in a safe way. Is LIFE EXTENSION A WEBSITE? I havent tried to search it yet. I assume the medication is over the counter not requiring a prescription? I will check and try to find where I can buy some and try it. thank you Sherry for noticing this post and remembering me. Phil

    Kay Forsythe

    Dad has low risk MDS, diagnosed in 2019 and platelets avg 50, white count 1.2ish (with weekly Neupogen shots), hemoglobin 7-8ish (with weekly Aranesp shot). Was prescribed Deferaserox (4 – 500mg pills at once daily) and the diarrhea was uncontrollable. That was the only side effect he has noticed. Dad stopped them, was not quality of life. I agreed with him. After speaking with his doctor and the dr suggested he start out slow. 1 pill per day for a few days, then add a 2nd…1 at night and 1 in the morning. A week later add the 3rd and etc That did the trick… the slow intro was very helpful. He now takes all 4 at the same time in the evening before supper, with no diarrhea.

    Thank you Sherry for the mentioning Lactoferrin. I was not aware of this and should we need to seek a different option. thank you.

    I moved dad into my home to get him to his appts and just be there when he needs me. He does fairly well. Transfusions seem to be about every 7 weeks. Really glad I found this forum.

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