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    Default ANCA range?

    I've been wondering.... I had a high c-ANCA and a borderline high p-ANCA. Though the range of normal ends at 0.8 (according to my Dr paperwork,) what is high and what is very high? How high have people seen it go?
    Also can anyone shed some light on how p-ANCA plays into Wegeners......the only comment I had so far from a medical person was its unusual to have both high???
    Thanks.

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    There are many ways to test for ANCA and many ways to report it. One just has to go with their own history. My PR3 was usually 0 or 1 when I was in remission then they changed the way they did the testing and reporting then it went up to 18 to 22 now. And there is no direct correlation between the old and new numbers.
    Phil Berggren, dx 2003

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    Thanks for the info.....but I had to laugh at how unhelpful it is that they changed the way they did it.

    My interest is only in that I am still undiagnosed, and do not know if I need to squeak a little louder at
    the professionals.... As I have been gradually declining over the past six months while they try to figure this out.
    Not to the point of needing immediate help, but wondering how much longer this is going to take.....

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    What are your symptoms right now Woody?
    Phil Berggren, dx 2003

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    Started seven months ago where I was "tired of breathing".....busy days would wipe me out. This now has made it where most days wipe me out. My lungs have like a burning feeling that comes and goes and I have definite lung places that "ache" more one of them being where my ex pulmonologist thought he saw pneumonia but says it is all clear now (this is why he is now an ex team member).
    I have had a long history of sinus issues /allergies, but do not have pressure.
    No physical indications of blood or sores that I have seen. And then some joint issues. and sensitive to warm days and some throat area sensitivity.
    The last rheum. appt they retook the ANCA for comparison and also the urine sample because of some traces of blood.
    I've been being a "good" little patient and taking Nexium because someone thought it might help, but it does nothing....just running that trial .
    My next appt is not until the end of Sept when I see my new pulmonologist. -which I am "hoping" (not with great enthusiasm) that he will do the biopsy as the ENT decided since I do not have active sinus issues, would not be the best kind of biopsy.

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    Quote Originally Posted by Woodsyartist View Post
    I've been wondering.... I had a high c-ANCA and a borderline high p-ANCA. Though the range of normal ends at 0.8 (according to my Dr paperwork,) what is high and what is very high? How high have people seen it go?
    Also can anyone shed some light on how p-ANCA plays into Wegeners......the only comment I had so far from a medical person was its unusual to have both high???
    Thanks.
    For many ANCA results and clinical symptoms don't seem very closely related. Mine are. Initially my ANCA scores were off the charts but once i got into a drug induced remission they became negative and in normal range.
    Knowledge is power! Wisdom is using it to make good decisions!

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    My cAnca is always above 200 ( they don't report the actual level beyond this number) The lowest since I was diagnosed almost 7 years ago, was 56 and that was after 1.5 yrs on cyclophosphamide.
    Jolanta

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    That's a GREAT question. I think different labs must report the c-ANCA in different ways. My Dr. said anything over 1:20 is positive for Wegener's (mine is 1:80), but then my PR3 was negative. So not sure what this all means??

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    My c-ANCA a 1.2 at dx and my PR3 was 41.1 at diagnosis.

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    I'm sorry, but I don't understand what the "1.2" means? How does that correlate to mine at 1:80?
    Thanks

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