Like Marta said, the most reliable indicator is a positive biopsy report. But it has to be from someplace in your body with enough Wegs activity that a good sample can be obtained. I don't know if the ENT can tell for sure visually that there are no granulomas in your sinuses. Nasal and sinus biopsies are notoriously unreliable, since it is often hard to get a good sample, though I was lucky and got my dx that way. For some people, a good strong ANCA reading says a lot, but biopsies are still done. For others, such as me and Marta, there is little or no ANCA reading, yet our symptoms point to WG and we get a biopsy, in addition to other tests like lung CT scans and the relevant blood work. Occasionally, an experienced doc is unable to get a good biopsy and will dx on symptoms and other tests alone, and begin treatment, and if it works, it is probably WG. You sound in great shape now, which doesn't rule out smoldering Wegs. I'd wait for your latest lab results and keep talking to the rheumy, asking her some of the same questions you asked here. She's a doc, and we aren't, though Marta knows more than I and is welcome to correct me on any point. Good luck.
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Last edited by annekat; 04-24-2017 at 11:24 AM. Reason: No
Anne, dx'ed April 2011
And even then, it is not always conclusive, since there are different types of granulomas and wegs isn't the only disease that forms granulomas.The most reliable source of WG verification is a biopsy where granulomas are discovered.
I have one very small granuloma in my lung and, of course, the big one that surrounded my pituitary gland, but, even at that, the docs, at least at Mayo, aren't absolutely certain that I have wegs. That, however, is in conflict with my local doctors 7 years ago and the U of Utah, Vasculitis Center, which gives you an indication of how difficult it is to make an absolute diagnosis.
Wegs is diagnosed by exclusion. When you have enough symptoms and everything else has been ruled out, then they might conclude you have wegs. Wegs doesn't have an absolute biological marker like some other AI's do, RA for instance.
From what I have gathered, most AI's, including wegs, are treated with pred and some type of immunosuppresant such as mtx or rtx. So, even if you have a misdiagnosis, you're likely to receive pretty decent treatment anyway.
Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
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Hi Anne, are you saying that most WG people don't feel better after a series of sinus infections, as I am feeling right now? From what I've read, it sounds like I could have "smoldering" WG that just hasn't reached the crisis stage that so many of you have experienced.
Believe me, this is not what I want to be dx'd with, but I am afraid to sit back and say, Ok, I don't have WG. I guess I should wait for the b/w results, even though it appears that the b/w isn't totally reliable.
Oops, I see you answered my questions in a prior post, Anne. thanks.
IMHO, I think the absolute best thing to do if you're feeling right now, is to not give this any more energy and carry on with life as if none of this is an issue. I think it's just as unhealthy to stew over the disease if there is nothing to worry about as it is to ignore it if there is something wrong with how you feel. I say just go with it for now, take that diagnosis of no WG as a blessing, and move on. If any crap ever comes up again, then you know where to look first for answers. You can go and see if it is WG flaring and instantly address the problem or eliminate the possibility, but in the meantime I say live your happy, symptom free life and thoroughly enjoy the feeling-right-phase-of-life. Having hung out on this forum, if nothing else, is a good place to gain some perspective and help with appreciating the days when you feel well.
Best of luck and may you never think of WG again.
Totally agree with Marta! If you are feeling well, then take it and run. Don't look back. Don't expend any more energy worrying about what might be.
Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
Forum Member Map -- world map for you to put a stickpin of where you are located....
That's so eloquently and succinctly put and I think is a great quote to live by, whether you have WG or not.
We need to follow this advice when we have islands of feeling good in a sea of feeling bad.
Use those moments to appreciate, live and enjoy every available second while feeling good: Not in the past (regret, sadness, anger, frustration,) not in the future (anxiety, fear, worry) but right at that moment (joy, acceptance, strength, spark of life, etc.) when you're feeling well.
I think those are the healing moments for whatever ails a person, WG or otherwise.
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