Hi all well it has been 3 months since diagnosis and treatment now. Just to remind you all how I got diagnosed. I started with sinus pain in Sep last year which worsened to the point where I was spending 6 hrs a day in shower just to get some relief from the pain. Then I started bleeding from nose, lost partial hearing on left side and finally chest scan showed growing lung nodules. I lost 15kg and night sweats and cough and going downhill quickly in Jan when I was hospitalised. Had 2 lung biopsies and finally a diagnosis of WG.
Treatment was 3 high doses of IV methylpred, and 3 rounds of cyclophosphomide and rutiximab every 2 weeks. Prednisone daily starting at 50mg and tapering down.
I have monthly blood tests and am due to have a chest ct later this month to check on my nodules.
Today I feel pretty good and no longer have my cough, albeit occassional one after lying down, no sinus pain or bleeding whatsoever and regained my weight to what I was before disease. My pred dose currently 10mg. The only thing I have lingering is my partial hearing loss in left ear. When I lie down or when I jump I can hear clicking so Im assuming its more conductive hearing loss but who knows. Im getting less hopeful it will return given that with high pred dose hearing returned but then went back to partial again.
Anyway my question relates to flare ups. Whilst no one wants one I was curious to know if the stage of diagnosis eg early or late is a factor in having a relapse. Secondly I read that approx 50% of ppl relapse after going off maintenance. Would the fact that Im not on daily medication other than pred mean Im no longer on maintenance?
Thirdly, I also read that approx 30% have kidney involvement at first presentation. I thankfully didnt. But the report then goes on to say that approx 80% will have kidney involvement. Does this mean that its likely that kidney involvement will occur in a flareup even if didnt have it initially? I sure hope not. Or are they saying that if not diagnosed and treated that kidney involvement more likely?
Thanks for your support guys.
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