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Grayson: I am a clinician researcher at Boston University. Ed--PSN Director: Can you tell us about some of the research you've done, or are doing? Ed--PSN Director: And, or, what specific areas of rheumatology hold your interest the most. Grayson: I am interested in vasculitis and other autoimmune diseases. It is a way for the rarer types of vasculitis to have their voices heard. I would guess that most rheumatologists wouldn't feel comfortable making the treatment decisions in PAN. You should discuss these symptoms with your doctor. Ed--PSN Director: Prednisone really is very, very individualized, isn't it? Ed--PSN Director: I always direct patients to the Vasculitis Foundation because they are legitimate and they present information that is accurate. I have done research in the online VCRC patient contact registry, using data from the VCRC longitudinal studies, and some of my own work in a new field of research called bioinformatics. So in a sense, the Contact registry is a major vehicle to conduct research in PAN. The answer is that it depends on the rheumatologist. We always say to immediately go to a rheumy, but you're saying that up front you should find out how familiar that rheumy is with vasculitis specifically? I see patients as a onetime consultation and then remain available to them or their local doctor by phone or email. I am curious if your body reacts to the weaning process of prednisone. Grayson: Without commenting too specifically on your case since I have never evaluated you, I would say that people can commonly experience withdrawal symptoms from prednisone, particularly when weaning off lower doses. I have tapered down to 4 mg should I go back in to get on a higher dose or give it time? In general, there is never one "proper dose of prednisone". Mary, if you are concerned that you are flaring, I would go back in and talk to your doctor. Should I expect to be fully out of the flair before I tapper all the way down? Ed--PSN Director: One last question----------- So a lot of people join my group and they may have just been dx'ed with PAN hours earlier by their doctors and they find our group and join it. Some of them read there is only a five year survival rate (untreated)..they are just totally freaked out. What should they know about PAN/vasculitis, and especially what CAN they control to help get the best care and the best chance to treat it? Grayson: I'd say to them: Peter : That is for sure! Grayson.........REALLY appreciate your time and knowledge.
Since this chat forum is limiting in terms of deep detail, I’ll encourage people to visit this site to learn more about Dr. This opens doors to doing lots of interesting online research. Ed--PSN Director: But reassuring to know that such studies are being done. to treat PAN or do I have to only to go Cleveland Clinic. If you live close to an expert center, like the Cleveland Clinic, then my advice would be to go there.
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