Quote:
Originally Posted by Leung
Hi, Angie,
Can you share more about your case? Do you have hypocellular marrow based on BM biopsy? What specific tests have you done for Lupus? On what basis did your doctor diagnose that it was Lupus causing your AA? What medication are you taking for Lupus apart from Plaquinil? Are you also taking steroid? You said your counts are coming up after taking medication for one month. What were your counts before and after medication?
My teenage niece was diagnosed AA 3 years ago. At the onset of the disease about 4 years ago, my niece had reynauds and pancytopenia and our doctor suspected Lupus. My niece then had blood test for Lupus but were negative. She was later diagnosed AA after a few BM biopsy. Prior to receiving ATG in August 2010, she was tested ANA once more and again negative. She only had mild response to ATG. After being RBC transfusion independent for a year, her blood counts have recently declined back to pre-treatment levels, and now requires transfusion again. After reading your post, I wonder whether my niece’s case could also be Lupus causing AA. If so, her treatment might be heading in the wrong direction. Would appreciate if you could share more details of your case. Thanks.
Leung
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Ok, let me see if I can answer all your questions here... When I originally was dx with AA 15 years ago, I had hypocellular bone marrow via my BMB. I was given the ATG/cyclosporin/steroid regimin and didn't seem to have a response. About a year later with me not medicated, but simply living on transfusions waiting to decide my next treatment plan, my counts started to recover on their own. I seemed to be in remission this entire time with my counts gradually getting better and better as the years passed. What doctors have found most fascinating was that while I was pregnant with my two girls, my counts were the best they had ever been (which they believe may have been because pregnancy naturally suppresses your immune system). After that my counts have very gradually started to drop, but ever so slowly. Just 1 1/2 years ago, all three lines have dropped below the "normal" range and have continued to drop. Once I dropped below the "normal" range, I developed the reynauld's and pantcytopenia together. My BMB is actually showing fairly cellular bone marrow, so they don't believe I've gone aplastic this time. They believe that I've developed evan's syndrome now. My hemotologist originally tested me for lupus and the test was negative. He still passed me on to a rhuematologist simply because of the trend they saw with my pregnancy and the reynauld's combined with my dropping counts. My rhuematologist said that she doesn't trust the regular lab work run by general hospitals because they use a basic testing and many times it will show a false negative. She uses a specific lab in LA that is the only lab she says that she trusts. When she did my testing, I showed up positive for ANA, but negative for everything else. She did say that normally in order to form a definitive dx for lupus, she would look for 4 indicators from the blood work and I only had 1, the positive ANA. She said, though, that lupus isn't the same for everyone and has many different manisfestations and indicators. With what she is seeing with me, she feels very strongly that it is lupus. I am currently on Plaquinil. She said that if she doesn't get the results she wants to see from Plaquinil, she will be changing me to steroids or a harder immunosuppressant drug. I've only been on this medication for 1 month and she said that it will take a full 3 months to really see a big difference, but in 1 1/2 years I have never seen my platelets go anywhere but down. This last cbc showed my platelets up 19,000 points and all my other counts stabilize. She called me and said that she feels it's a step in the right direction and is hopeful that we will see my counts progressively rise as the months go on. Sorry for the book! I hope I was able to answer all your questions!
