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Thread: sle and aplastic anemia, any one have heard of this?

  1. #1
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    Default sle and aplastic anemia, any one have heard of this?

    1974 ~ 2002, Generally very healthy before 2002. However with a little bit low platelet above 125k and a little bit anemia (hgb around 11-12)from 1997. Easy to have buise. Hair was thining out.
    10.2002 , Naturally delivered a healthy boy. At that time, my thyroid function was tested and found normal TSH, but the antibody level was not test.
    7, 2003, I was found hypothyroidism. Blood started to decrease from then on, but the GP didn't catch it, the labs for blood test were: wbc 3.5,rbc 3.94,hgb 12.2,platelet 90
    At the end of 2004, had some episodes of stiff joints, Renould symdrome and ocular migraine.
    In February 2005, went to clinic for abdominal pain only to find pancytopenia. Bone Marrow Biopsy from Oregon Health and Science University showed hypocellularity of 15%. It was defined by the doctor there as moderate Aplastic Anemia. Transfusion independent. Monthly check up for blood test.
    May 2005, had an abdomain surgery at uk because of abdominal pain. But only found inflammatory bowel. But blood condition started to get worse and got blood and platelet during the surgery, and then after.
    May ~ September 2005, recurrent abdominal pain and vomiting and nausea. Weight decreased from 140 pounds to below 100 pounds. Need transfusions of blood about once a month and platelet weekly but was higher than 10K.
    September,27, 2005
    Had ATG, with prednisone and cyclosporine

    10.11 ,2005, Had IVIG , not working


    9. October 17, 2005

    Had heart failure with ECHO, ER = 20% (previously 80%)

    Nov 2005, admitted again because of abdominal pain and vomiting. Found to have SLE with kidney involvement. Start treatment of cellcept and prednisone. Digestive symptoms are well controlled, but the blood condition is still very bad.
    need red cells 2units/2weeks and platelet 1/week


    Any insight will be highly appreciated.

    My email is lupusaplasticanemia@gmail.com

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    Hi, Redcloud. I wish I had some insight to offer you, but aplastic anemia is a fairly rare complication of lupus, so there isn't much research available. In addition to the ATG and cyclosporine, some researchers mention plasmapheresis as a treatment option, also stem cell transplantation. It sounds like you have already undergone the standard treatments for aplastic anemia - have your doctors recommended any other potential treatments? And do they think the lupus and the aplastic anemia are related?

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    Quote Originally Posted by MARYCAIN
    Hi, Redcloud. I wish I had some insight to offer you, but aplastic anemia is a fairly rare complication of lupus, so there isn't much research available. In addition to the ATG and cyclosporine, some researchers mention plasmapheresis as a treatment option, also stem cell transplantation. It sounds like you have already undergone the standard treatments for aplastic anemia - have your doctors recommended any other potential treatments? And do they think the lupus and the aplastic anemia are related?
    Dear Marycain,

    Thank you for your reply. They recommend bone marrow transplant now. They still don't know if they are related or not.

    The rhuemy said maybe no. The hamatlologist said it should be.

    Very frustrated!

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    I'm sorry you are facing such a difficult situation. Do you have any siblings or other family who are potential marrow doners? I know the odds of a successful transplant go up when you have a good match - I hope someone in your family will qualify.

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