Hi Sue and welcome!
Yes, it's unfortunate that many doctors don't know enough about this disease. Have you seen the list of Consultants at the Vasculitis Foundation's website? These consultants are available to other doctors to contact if required. Most of them are in the USA but there's one in Cambridge and a couple in Europe. See here: Vasculitis Foundation Medical Consultants
It's always a shock being diagnosed although in many ways, it's a relief as well because finally someone has found out what's wrong.
Glad that his kidneys have stabalised, that's good. Really good. Not many things suck as much as Kidney problems
Now, as far as his breathlessness is concerned, perhaps it could be Tracheal Stenosis???? There are at least a couple of people here on this site that have it or have had it previously. I'll leave it to them to discuss.
Great that his bloods are getting back to normal too. What medication is he changing to?
Again, welcome and drop by any time!
Forum Administrator
Diagnosed March 2003.
Currently but not permanetly residing in Canberra, Australia.
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