Welcome to the family @Vansyckle73
I was dx on 8/1/16 in Boston after I had 3 months of ear pain, pressure and (once tubes put in) drainage. Nothing could improve my ears so they finally ran inflammation marker labs, then ANCA labs, then CT scan and then lung biopsy. All positive/Weg GPA. I have been on pred and rituximab. Much improved til they started tapering pred. Ear pain has returned and pred brought back up to 30. Only 2 days now, but no improvement. So I'm thinking maybe I have an ear infection instead.
Like others mentioned, autoimmune disorders like ours fall under the care of a rheumatologist generally. Tho some see nephrologist to coordinate treatment too. I think it's because a specialist, like a pulmonologist, just focus on one body part generally. While the rheumatologist is trained to treat the vasculitis systemically and seek input from specialists. They take all that info and take the lead in the patient's care. I'd think rheumy docs see more Weg GPA patients too and probably are more up-to-date on latest treatments etc. I addition to the pred and ritux I'm on Prilosec to Proctect my stomach, fosomax to protect my bones and bactrim to help fight lung infections. Pred can be rough on stomachs and bones. I'm also told to take calcium w/ vit D. And prescribed ambien to help me sleep.
Hoping this info helps.
Wishing you the best as we both are starting our Weg fight together.
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