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Antiphospho lipid antibody syndrome

Posted by @shar in Just Want to Talk, Jul 5, 2011

Anyone else recently been diagnosed with this auto immune disease? I've seen my primary doctor as well as neurologists, and a rheumatologist. They all have bascially shaken their heads and then gave me the same story: We don't know what causes it and we really don't know how to treat it. But I know there has to be something I can be doing proactively to at least slow down the progression if not stop the disease altogether. I would like to hear from others who've been down this same road. Thanks.

Tags: auto immune disease


Posted by @barbp, Jul 8, 2011

My 9 year old daughter may have this syndrome -- her rheumatologist is still not really sure. Positive ANA for years, crhonic ITP, lupus anticoagulent and at times positive anticardiolipin. We are also wondering if she has lupus, and actually waiting for some labs to come back. Have you seen a hematologist as well? What are your symptoms that led to your diagnosis?


Posted by @markwages, Jul 28, 2011

I spontaneously developed several DVTs (blood clots) in my leg within the past two years. My hematologist placed me on Coumadin to reduce the chance of DVTs. He informed me that I would have to take it for the rest of my life. He said I could develop arterial blood clots as well. I was treated with Pradaxa during the time I had the blood clots. He said I could use Pradaxa in place of the Coumadin. It is very expensive, and (of course) my insurance will not cover it. So, I am taking Coumadin and getting my protime taken frequently.

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