I am not sure what my consultant is waiting for- I am P anca positive (MPO) with Sjorens diagnosed, (Via lip biopsy only). My bloods show very little and always have apart from auto antibodys and severe symptons that progressed to a bowel perforation.
I recently wrote on here about needing help and seeing the vasculitus experts. I have seen them in clinic- rheumatolgist was thinking put me back on Mycophenalate (was already on it but did not have any effect) and ritizumab spelling) but they had a meeting and I believe the kidney biopsy is on hold as protein levels are not high- but present. So nothing has changed except my symptons- it was suggested I go up on my pain patch but that is not dealing with the problem.
I had a stomach/bowel biopsy which did not show vasculitis. I am currently suffering with extreme pain all over particularly back , ribs and long bones, excessive sweating but more so in day time and on moving, sore eyes and sinus pain/headache is back.
I went through all this before the perforation and knew something bad was going to happen (felt like my stomach was being eaten away). they took little notice (vasculitis team) then had the perforation. Here I go again- nothing has changed at all!
I am seen at Addenbrookes and live in Lincolnshire.