Technical question: 3 years of positive antinuclear antibodies gone. Why? A few months ago showed a titre of 1:1100. New GP & test negative!

I have had 3 years of ANA positive results correlating with systemic sclerosis. This has been rising in titre every year since my first rheumatology investigation for various aches and pains. (I was ENA negative and I only have a touch of Raynauds). I don't understand why I am now testing ANA negative. A lab mistake? Any information welcome. That's a bit of a change in a few months.

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  • I don't understand either. Was it the GP or the rheumatologist that had it done? We know there is no cure don't we.

  • I would definitely ask for a retest.

  • Could be that a different test centre was used. I believe though that you can still have SSc without having positive test results because a Rhuematologist looks at his own clinic findings as well as blood results.

  • I've read that too - that you can have SSc without having positive test results which explains why I'm diagnosed with SSc with only slightly raised ANA.

  • From 2007-2011, I had high ANA (tested several times over 1:1,000). It was tested again after my AMA was discovered in Spring 2013 and now it is totally back to normal. I don't understand why, but have appointments scheduled with both my Gastroenterologist and Rheumatologist in September and it's already on my list of questions to ask. When I find out some answers, I'll be happy to share.

  • Thank you for your help. I saw 2 rheumatology doctors last week, about puffy hands and feet, plus a sore knee and tendons. I asked about changed antinuclear antibody status - was I ill, or not ill? They said one negative ANA test result means little in the context of previous positive results. Perhaps it was the testing method of a different hospital lab. But they don't pay much attention to ANAs. They see people who never develop disease, but always have high titres; or develop first-time positive antibodies, which disappear when an infection is treated.

    I presented with raised antibodies after a car crash.

    The consultant said they'd be looking for circulation damage, in particular. Asking about bowel problems, hair falling out, or ulcers; those would tell them more than ANA does. It's about how well the patient seems.

    I have to help myself by losing weight, swimming when I can't walk and doing exercises to strengthen the muscles that support my possibly damaged knee. I had an immediate X-ray.

    He said disease development - or not - can take many years. (And not every illness I might get is rheumatology related.)

    I've read other posts and there is a spectrum of discussion; I am well acquainted with pain, so wish you all well and thanks for a forum where people can ask anything, safely.

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