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  • Autoimmune Hemolytic Anemia

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    Old 04-29-2003, 11:54 AM   #1
    redheadangel
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    Question Autoimmune Hemolytic Anemia

    Hi there I was just wondering if anyone else out there had Autoimmune Hemolytic Anemia. I was dignosed in Jan., since then I have been on high doses of predsione (which I hate). My docotors say I should be feeling better but I am not. I am tired all day even after getting 12 or more hours of sleep. Not just tired but like exusated, tired. I have been from Doctor to doctor to see if there could be another problem and no one knows nothing, so now I am trying to find someone out of state. Is anyone going through the same thing or know a GOOD hematologist? Thanks.

     
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    Old 05-31-2003, 09:56 AM   #2
    teresa34
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    Red, I was looking around on these boards, I usually am at the epilepsy board but I wanted to check out the anemia board out of curiosity as I had Autoimmune Hemolytic Anemia 19 years ago. I was in my second year of nursing school and become profoundly ill. I was transferred to a large metropolitan hospital where they initially thought I had leukemia. Odd thing about mine though, was I was on steroids BEFORE the anemia to treat a recurring case of the hives. The steroids caused me to develop elevated brain pressure which caused me to lose some peripheral vision in my left eye. They diagnosed the anemia and I received four units of packed red blood cells. My hemoglobin had bottomed out at 4! I didn't require any other "treatments", I had a ton of diagnostic tests but they never could find a "cause". I slowly recovered, my appetite improved and I gained some weight back. I've been fine ever since, this was in 1984. Honestly, I was 19, I was in my second year of college, I had been diagnosed with epilepsy a few months before, my father died 7 months before, my boyfriend's dad had also just died and him and I ended up going our separate ways. To this day, I really believe it was extreme emotional stress, I had never had such a rotten time in my life before or since. It started out with these horrible hives all over my body, and there was no reason for them. They wouldn't go away without steroid treatment, and then my brain pressure went up and the anemia became very obvious. Tired was not the word,,,night of the living dead would have more accurately described how I felt! I would get chest pain taking a shower, and I could blow dry my hair without lying down to rest in the middle. I was treated at Geisinger Medical Center in Danville Pa...Good Luck

     
    Old 06-08-2003, 09:23 AM   #3
    kymomlee
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    My 3 year old has hemolytic anemia since 13months old. We have been on steriods tried ivig and finally rituxan. It seems like the rituxan is working although she had to have 2 courses of it. she was initially diagnosed at University of Virginia hospital, but we moved to be closer to family. I think most university hospital have a good hematology program. What is your hemaglobin if you are still very tired you may not be responding to steriods
    Bree

     
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