Welcome, James!
Wow, you've had a rough row to hoe. Do you have a vasculitis specialist on your treatment team? If not, you can go to VF Medical Consultants to find one who will consult with your team. Also, there are specialists listed who are at Duke and UNC Chapel Hill. They will consult with your local doc for free.
I'm a bit older than you (68). I was diagnosed four years ago after a much briefer disease onset. I had the ear infection that wouldn't go away, followed in quick succession by a dry, unproductive cough, and night sweats. I've never had uveitis or the skin lesions/tumors you mention. I had cramps in my hands, primarily as a result of high-dose (necessary) prednisone. At this point, I'm in a medication induced remission. Fortunately, I feel as well now as I did before I got sick.
At any rate, you've come to the right spot. There's someone on here virtually 24/7/365 as there are members worldwide. Feel free to ask questions, get advice, or vent your frustrations.
Good luck and better health (soon!!).
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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