hi,i am sure i had wg for years before finally my kidneys almost failed & my gp who had some knowledge of it sent me to addenbrookes hosp. in cambridge, where they have a vasculitis clinic,
initial treatment was high doses of pred & immun suppress.the first 6 mths were horrendous!partly due to side affects from drugs,thanks to good
support from my gp & patience from my family(sometimes sorely tested)
i got through the worst,i would say to anyone newly diag. to take one day at a time, however bad you feel & sometimes you will wonder if you will get thru, my doc told me from the start 2 years is how long it takes to get it under control,you then realise life is changed,its THEN when you have to learn to live with it! after 18 mths ive relapsed, so back to pred, & more
frequent visits to clinic, talk about swings & roundabouts with this wg,
i am retired, so in many ways wg does not affect me as much as younger people with more active lives,
had monthly clinic app, yesterday, was asked to take part in research into
brain involvement in diseases that involve the immune system. sounds like fun!
wish i had found this site few years ago,we need all the support we can get,because its so rare, it can be very lonely & scary out there,
if i can help anyone get thru a bad day i would be happy too, often still needful myself!
i must stop waffling on! best wishes berylj