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  • Autoimmune hemolytic anemia

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    Old 06-18-2003, 03:02 PM   #1
    kymomlee
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    Question Autoimmune hemolytic anemia

    My daughter has autoimmune hemolytic anemia and has been off steriods for about 12 weeks. She got 8 doses of rituxan and multiple doses of IVIG. She was doing really well, then she developed a cold and It looks like we are starting the process over again. The tiredness, dark urine, fussiness.
    Has anyone else had this happen after awhile of doing well? We have been dealing with this for 2.5 years and I am sick of it. She spends too much time in the hospital. In November, her hematologist had a mediport placed because she had no viens left.
    The hematologist doesn't understand why nothing is working. Everytime we see him, He says "Why has she outgrown this yet?" He doesn't want to put her back on steriods ( she was on them for over 2 years), so I wonder what is next?
    Sorry just needed to vent some frustration.
    we go for labs in the am.

     
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