Dear all, I'm UK-based. I had a diagnosis of MPA renal vasculitis nearly 3 years ago, admittedly, caught very early; I was treated according to the current protocol (cyclophosphamide; rituximab 2x; couple hits of high-dose steroids, then stop) followed by MMF (I don't tolerate Aza; this is next-best option for me & because of danger of kidney involvement, methotrexate not a runner.)
Initially, I practically scared myself witless having read loads about it, then calmed down & just plain listened to the wonderful people who treat me. The side-effects to MMF are annoying but mostly tolerable (it's the other wear & tear stuff that is a real nuisance; here, I thought I was 'immortal'--Ha!). My daughter-in-law's Mother unfortunately had a diagnosis too late; her symptoms masked by her husband's ill-health, till it was too late & she passed away just before Christmas which really hammered home the point that Vasculitis can be fatal unless taken seriously. It was no one's fault here, I hasten to add. Her Drs & health care professionals in LA were brilliant; it was just too late! And I was grateful all over again for my early diagnosis (which was partly due to my really wonderful GP who wasn't happy with my 'random symptoms' which included higher than normal BP & an odd creatinine spike so sent me to a kidney specialist) and for the fantastic care I've received at the hands of the NHS.
My recent bloods indicate that I am well & truly in remission & my dosage of MMF will be decreased to half what it is in May. It may stay that way, who knows? But I'm armed with enough 'tools' like what to look for & when to alert my docs and that is a great help!
But too, remember that it's important to stay as positive as possible; if there is a Vasculitis Support group, one that meets face-to-face every so often, it is Very, very helpful. I know that being in an echo chamber can sometimes be even more frightening; this is a weird disease since it's so random & just lands.
And on we go.