Re: Brain Bleed - Central Nervous System Vasculitis
how scary... i am so sorry.
my daughter who's 10 was diagnosed last year with vasculitis (hypocomplementemic urticarial vasculitis) it's a very rare, systemic autoimmune disease which can effect any of the blood vessels (and organs) at any time...
the most important thing we found when dealing with vasculitis is prevention of inflammation with meds...
usually in an acute case the drs will first use high doses of prednisone (sometimes in combo with others) ...and then decrease over time.
my daughter has been on plaquenil for over a year in combo with dif meds-- right now she's on an antihistamine + plaquenil + methotrexate-- so far 10 weeks in no sig improvement,,,, yet we just keep trucking on.
sorry to babble, the most important thing for you is treatment... and support. johns hopkins in MD has a wonderful vasculitis center... and there are other vasculitis organizations that can offer education and support-- more and more has been available for CNS vasc. (unfortunately very little is known about HUVS)
hope we helped even a little