Left waiting-

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.

4 Replies

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  • Hi

    So sorry to hear you are still having such an awful time. ,

    Have you asked your medical team the same questions? As nothing showed up on the bowel biopsy do they think that Vasculitis wasn't the cause?

  • Hi Keyes,

    Trying to get to talk to them is another matter- I note Vasculitis consultant mentioned Lupus in his letter- rheumatologist said Sjorens but now vasculitis. I speak to the rheumatologist nurse more than anyone else. They said there were traces of vasculitis then next time they looked gone- this is from my family when I was in ICU- my rheumatologist says there was no vasculitis found,

    Trying to get my notes from the hospital where I was or information is becoming a real problem,

    I have asked to speak to rheumatologist (who is excellent) and has done more for me than anyone else to find out more- each week is going by.

  • I would consider contacting PALS and making a formal comment/ complaint, not about an individual but about the lack of information and continuity of care.

    I had to make a complaint about my care to get things sorted and access to biologics which are making a big difference to my symptoms.

  • Thank you Keyes, I will be chasing all of this up as now frequently awake early hours of morning thinking about it all.

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