My first ever blog! I was diagnosed with micro polyangiitis vasculitis in early April at the age of 56. Having now joined the support group it has made me appreciate how fortunate I am. The diagnosis was quick enough to ensure my kidneys did not take a serious bashing and they seem to be making some recovery. The response to treatment (Pred. and Cyclophosphamide)seems to be going OK but the side effects (lack of sleep, night sweats leg cramps, mouth ulcers, bouts of tiredness etc.) are not a barrel of laughs. However compared to how I felt before the treatment it is a fair trade at the moment. How things progress from here, is I appreciate uncertain but I prefer to focus on the here and now rather than worrying about what might happen. I’ll cross those bridges when I come to them.
It does concern me that not everyone out there seems to be getting good aftercare, simply due to where they live and the level of knowledge/expertise in their area. It seems the NHS needs to be more joined up in dealing with vasculitis. I am lucky that I am being treated at the Queen Elizabeth Hospital, Birmingham which is a centre of expertise on vasculitis. I signed up for three clinical trials on vasculitis which has brought me under the care of the Welcome Trust (research centre) at the hospital. All I have to do is agree to provide regular additional blood specimens and for my DNA and biopsy tissue samples to be used in the research which will eventually be published. One of the things they are looking at (PEXIVAS trial) is the benefits of the alternative plasma exchange treatment with a view to being able to reduce the initial high doses of Pred. In return I am getting very closely monitored treatment by the research team. My consultant Lorraine Harper has contributed to a number a papers on vasculitis over the years. I suppose there will come a time when I will be transferred to the care of my GP but I’m hoping the QE team will still remain there for support.