Another newbie - Chicago area - Best friend DX'd with Wegeners yesterday (8 July 2010

[Jack]

The blood test was probably the ANCA test. Try doing a search on this forum for ANCA in "Titles Only" and you will find several threads on the subject. It is a cause for debate on the forum because it used to be considered very important in the diagnosis of Wegener's, but now has lots of questions attached.

[JanW]

Cubby: Having a positive biopsy is considered the 'gold standard' and 100 percent, conclusively proves that you have WG if the granulomas are found. The problem is that biopsies can be done (as one was in my case) and you don't find granulomas, or you don't even get enough biopsy-able material. So a good doc would never 'not' make the call of WG if they couldn't get a biopsy that was positive for the disease.

That having been said, your friend has scleritis which in and of itself is rare and positively associated with WG. Also, ear infections. There are certainly many people who have posted on here who only have on or two symptoms, or varying severity who are being treated for WG (my serious symptom is subglottal stenosis but I have little of the systemic stuff that people here report.

I'm not saying that she has WG for sure, but the bloods (and the fact that c-ANCA isn't associated with other disease) with the rare inflammation of the eye and ears are adding up for the rheumy. In any case she is being treated with a very middle of the road immunosuppressant which hopefully won't cause side effects.

[Jack]

I agree with most of that although I would not dismis the possible side effects of Methotrexate.

[JanW]

Quite right, there definitely can be side effects, just hoping that she won't have any.

[Sangye]

Just chiming in to say Ditto. Ear "infections" + scleritis + positive ANCA points to Wegs. She needs a proper evaluation and dx by a Wegs specialist. If she cannot find one in Chicago, she should seriously consider traveling to Mayo Rochester or Cleveland Clinic (whichever is closest) for a proper workup. If it were me, I wouldn't trust any non-Wegs specialist who says she has Wegs or doesn't have it, or that it's in remission.

Proof via biopsy is not always an option. Sometimes they have to treat empirically and see how the symptoms respond.

[Col 23]

Welcome Cubby, hope your friend is going okay and has a confirmed diagnoses as soon as possible.
cheers col 23