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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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Viewing 6 posts - 1 through 6 (of 6 total)
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  • September 16, 2019 at 8:44 pm in reply to: Rising ferritin level #49048
    Michael Busalaki
    Participant

    I will sure give it a try thanks.

    September 16, 2019 at 11:04 am in reply to: Rising ferritin level #49039
    Michael Busalaki
    Participant

    Hi I am also transfusion dependent 2 units every couple of weeks. My doctor prescribed me Jadenu because my ferritin level got up to 1800. It was a battle to get my insurance company to take care of it. It took three appeals before they gave me the ok. As far as side effects diarrhea ,nausea. My counts while on this stay between 400 to 700. If you get it take it at night that helps.

    August 27, 2019 at 2:21 pm in reply to: Luspatercript #48747
    Michael Busalaki
    Participant

    Thank you and good luck we all need it

    August 19, 2019 at 1:19 pm in reply to: Luspatercript #48698
    Michael Busalaki
    Participant

    Thank you for the info i was diagnosed almost a year ago and was told i am low risk as of now. I am 60 in good shape still work everyday. I have had approximately 26 units of blood over that time. I am currently on procrit and then Jadenue for iron overload just hoping this new drug becomes available and works for me.

    August 11, 2019 at 6:41 pm in reply to: Luspatercript #48682
    Michael Busalaki
    Participant

    Thank you

    February 28, 2019 at 9:45 pm in reply to: Night Sweats #45176
    Michael Busalaki
    Participant

    Thank you my only problem so far is the low hemoglobin from red blood cell mutation. I get an procrit injection every week i was hoping for a double triple maybe a home run with it, but barley hitting singles. The Doc said next visit he might try a study drug.

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Viewing 6 posts - 1 through 6 (of 6 total)

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