ANA positive, but comp. negative: I have had a... - LUPUS UK

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ANA positive, but comp. negative

Jennwebb2006 profile image
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I have had a positive ANA add I have 9 of the 11 symptoms of lupus; however, when my doctor done the ANA comp. test it came back negative. I was, also, diagnosed with fibromyalgia in 1998. Has anyone else had this to happen and still had a lupus diagnosis and, if so, how did you get the diagnosis?

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Jennwebb2006 profile image
Jennwebb2006
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3 Replies

I have Sjögren's rather than Lupus but my specific antibody panel is negative too despite a very clear positive ANA and high inflammation markers. I was diagnosed by lip biopsy last year.

It depends on how high your ANA is because some people with no health problems at all can have positive ANA. If the rest of your ENA panel is negative and you haven't got anywhere for biopsies to be taken from or organ involvement - then you may need to find a rheumatolgist who is open minded enough to diagnose seronegative Lupus. Alternative you could get lip biopsy done for Sjögren's perhaps - if you also have dry eyes and mouth. Or a skin biopsy done of possible discoid rashes. They may want to retest your ANA at regular intervals to be sure it wasn't a false positive.

Fennella02 profile image
Fennella02

My ANA has tested negative far more often than positive but my diagnosis still stands. Diagnostic criteria are much more exact these days which is both good and bad. I was diagnosed with no positive antibodies but a very typical lupus profile. I have had my dx re-evaluated and SLE/UCTD was proposed however, I'm now back at just Lupus regardless of antibodies. Recognition of an auto-immune inflammatory process is, in my opinion, the most important first step and can be blurred by a simultaneous Fibro picture. I have never had Fibro suggested as a possible diagnosis for which I am very thankful.

As Twitchy says, you may need to find a Rheumy who is sufficiently well-informed & wise to identify a sero neg inflammatory condition.

Also, it's important to remember that lupus is the great imitator and can be confused with a great many other conditions.

Wishing you all the best. Clare

soootired profile image
soootired

I had a positive ANA which got me referred to the lupus clinic and my 3rd rheumatologist. I was told I had lupus but since starting hydroxy it's come back negative and now on paper I have UCTD.

It used to bother me because my rheumy is a bloods man and doesn't go in for sero negative etc. But he IS treating me and I'm now on azathioprine which is working and he can't deny that, so he's going with it.

Ultimately the label doesn't matter so long as I'm being treated - Even though it was a bit frustrating for a while! And the treatment IS working so that's what matters.

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