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Old Sun Feb 19, 2012, 04:25 PM
mscrzy1 mscrzy1 is offline
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Join Date: Jan 2011
Location: California
Posts: 103
Yes, to getting tested for lupus. I had SAA over 15 years ago. They had done the ATG treatment of which I didn't have a response. I was transfusion dependant while we figured out our next form of treatment when I started to recover on my own. Now, I'm having a decline in counts again. They are not near the severity of decline I had seen originally and I have a rheumatologist on my team of hematologists now. You can read my story to get the full story, but they "think" I'm actually dealing with lupus. Lupus is difficult to diagnose. You can test negative on the ANA testing and still have lupus. I'm currently taking Plaquinil and seeing my counts gradually come back up. My hematologist is starting to agree with my rhuematologist especially after seeing my counts on the rise and finding out that the ATG did nothing for me, but I started to turn around on my own. He had said that is typical for autoimmune diseases. Said he has had patients with ITP in the hospital where they have done everything they thought they could for them with no improvement then suddenly out of nowhere the patients start to improve on their own with no treatment. After reading that your husband had recovered on his own with no treatment, I would seriously look into lupus. Good luck!

PS: I would be sure to get a rhuematologist to test for lupus. My hematologist tested me for it and I was negative. My rhuematologist said that the tests are very generic through regular labs and aren't as accurate. My rhuematologist tested me and I was ANA positive, but the rest of the blood indicators were negative. She was still unwilling to rule lupus out. I have no other indicators, except raynaud's. As I said...very difficult to diagnose, but good to have a rhuematologist check it out. They are more versed in lupus and what to look for to diagnose it.
__________________
Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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