Atypical ANCA positive: So I have found out... - Vasculitis UK

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Atypical ANCA positive

lc24 profile image
lc24
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So I have found out that my test was atypical ANCA positive. The MPO and PR3 ran with it were all low and within range. It says no known clinical relevance. Doubtful clinical significance. Does this warrent further investigation? Gps don't seem to think so. Would like to know your stance on this result.

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lc24 profile image
lc24
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3 Replies

ANCA and PR3/ MPO by themselves are fairly meaningless. You can be ANCA negative and have an ANCA associated Vasculitis and be ANCA positive but not have Vasculitis. It’s a clinical diagnosis made on the basis of bloods, symptoms, scans and biopsies etc. It’s not a case of ANCA positive you have Vasculitis and ANCA negative you don’t.

It’s difficult to know what else to say, if you feel you have symptoms warranting investigation then you need to put that to your GP and ask for their response in writing with the clinical rationale/ evidence base used to say you don’t warrant further investigation.

charleydee profile image
charleydee in reply to

i was diagnosed ANCA positive vasculitis MPA in 2015....GP's no very little about this disease..if in doubt ask for a referral to a reumatologist ....my blood results in October last year my ANCA was negative....in January it's back to positive...confusing...the evidence is in all of your blood results...always check for your own peace of mind.

Canygirl61 profile image
Canygirl61

Dear lc24,

I too tested positive for c-anca (twice, within a few months), but normal for pr3 and mpo. I’ve had normal results from a spinal tap, and MRI that’s considered normal for someone my age (56). It showed something like, “multiple T2 flares in the white matter.” Which could be indicative of migraine, or MS (my doctors don’t think MS). They’re not sure what I have, and in September tried a short round of prednisone and Plaquenil. After all the testing, they’re now back to trying very low dose of prednisone for a month. You should definitely push to see a specialist in vasculitis.

Best of luck!

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