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.