Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

[Al]

Al, I think the more people that are diagnosed with vasculitis makes "the classic WG" less classic. I am positive MPO actually more often than I am PR3 - yet sometimes both are positive. I have lung granuloma, sinus, and kidney involvement. I do not think they should force us into standard boxes; however, for the sake of science it seems they must do that!

I agree, Trudy. Personally, I have kind of a love/hate relationship with diagnoses, both in principle and in fact. The main reason for a DX--any DX--is to justify a certain therapeutic course of action. Bully for Big Pharma (and for research based on pharmaceutical treatment protocols), but less meaningful, in many ways, to the actual sufferers. Yes, I know that patients like a diagnosis as a kind of "closure", and it is true that doctors would be irresponsible to begin harsh treatments without a clear path to some sort of remediation. Yet the bottom line is that, when you hurt, you hurt. The rest is, as they say, commentary.

I think that it is a good start that the present nomenclature does allow for many variations along several continua: Vasculitic vs. granulomatous characterization; ANCA positive vs. ANCA negative presentation; C-ANCA/P-ANCA/Atypical ANCA in any combination; and so on. There are a few normal (but not definitive) correlations, which is why certain names have a ring (but no guarantee) of certainty: Upper airway involvement is less usual for P-ANCA than for C-ANCA (as I have always had P-ANCA, this describes me); Granulomas are more associated with C-ANCA (my biopsies have suggested "vague garnulomatous formations", but nothing obvious); P-ANCA correlates more highly with kidney involvement (both correlate highly with lung involvement, though there there are fewer P-ANCA patients without lung involvement than C-ANCA patients); some sort of ANCA correlation is present in about 90 percent of those with any of the known vasculidities that we think of as "WG". Nevertheless, I am not a big fan of thinking of names as having magical powers. They are, to me, a feature of conversation. That is all.

Al

[HopeinTN]

I agree with you both. I'm just so curious about this crazy disease and thought I had an understanding until this stumped me. Nevertheless, as Al mentioned, I'm gettign the correct treatment, the rest is Alphabet Soup. It's all so weird.

I'm so thankful for wiser and more seasoned minds on this site. I would be so alone in all this without you guys.

Hugs to all!