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Posted by: Sarah
Date: August 2, 2000 8:26 PM

My niece, Gina, has lupus and has now developed vasculitis. It is totally eating her right leg away. I viewed a picture that resembles what hers looks like and it was titled "occlusion of blood flow. She also has all the symptoms of "respiratory vasculitis" and, I believe, has been misdiagnosed with "yeast infection. She currently has three open sites where her current doctors have lanced the skin and removed the dead tissue. This last one is on the back of her calf and is 6" inches by 3" and is extremely deep. It goes all the way through her leg to the skin. It's hideous and looks like a shark bite. They 've cut and cut on her leg. The treatment she is on now is antibiotics (that she's been on for months), hyperbaric oxygen, and that's about it. In the meantime, she's developed two more little white bumps above two of the open sites and that's how they've all started. It just seems to be creeping up her leg and doesn't show any signs of stopping. If it continues she will most definitely lose her leg. They've already taken out quite a bit of her leg muscle. We live in a pretty small town and I don't think our doctors have enough experience to treat her effectively. What's more, they don't seem to care very much. Do you have any recommendations for a doctor who specializes in the area of lupus/vasculitis? Any advice would be much appreciated.

RE: lupus/vasculitis
Posted by: Ron Kennedy, MD
Date: August 2, 2000 8:42 PM

Anyone who "specializes" in lupus vasculitis would probably not be doing any better than your local docs. Specialists often do not produce special results, particularly in hard to deal with cases. It sounds like your sister has a very advanced case.

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