I was diagnosed with WG in April 2002.
In the weeks leading up to this I was suffering awful headaches, so bad that I couldn't sleep. The various GP's at my surgery diagnosed this as sinusitis, and told me to take Ibuprofen - the maximum dose allowed - which continued for weeks. Then, in April 2002, I suffered a right lentiform intracranial haemorrhage - a bleed in the brain - which dragged me off to hospital where I was diagnosed with WG. I was treated with the usual combination of cyclophosphamide and prednisolone. At the time there was no kidney involvement, and I spent a month in hospital.
A month after I came out, the disease flared again [back to hospital for another month], this time causing '..significant kidney damage', with creatine levels rising alarmingly. It was decided to try a plasma exchange - or rather a series of them.
It really turned me around. Not only my kidney function, but it seemed to bring the WG under control.
Despite having this condition for about 10 years, the people on this site seem far more knowledgeable than I.
My question is, did the plasma exchange effect the WG, or was this coincidence, and it was the drugs finally getting the upper hand?
Plasma exchange can be used in refractory/difficult cases of vasculitis. We're keeping it in reserve for my case of cerebral vasculitis, though the consultant is trying all sorts of other things first.
So it might well have been beneficial for you.
How are you doing now?