ANA keeps changing

[wendyhoney]

New to this but here goes. Short version - 2009 I had a positive ANA and high dsdna. Was seen by rheumatologist who retested and said they were normal. I remained ill and was retested in 2011 -again positive ANA and high dsdna. But they decided I was ok as and just 'keeping an eye on me'. In 2012 I was diagnosed with pernicious anemia which I receive shots for and that side of things seem ok. However I've never felt quite right and I've now been tested again with a negative ANA but borderline dsdna. One doctor says you can't get a positive ANA without having lupus but the other says if you have lupus the test results are always positive for life. Any one else like this and do I or don't I? (Sorry for spelling - my tablet won't let me correct)

[whisperit]

Hello wendyhoney

My understanding is that both those opinions are incorrect! First point to make is that, in the lab, ANA results aren't a simple positive/negative binary. They are usually expressed as a ratio, which indicates the dilution at which it is still possible to detect Anti-Nuclear Antibodies in your blood. The "positive"/"negative" interpretation depends on what dilution counts as abnormal with the particular test your laboratory uses.

Anyway, a positive ANA is a good indication of some sort of auto-immune disorder but it is not specific to lupus/SLE - it might be caused by some other disorder. The Anti- dsDNA test is highly specific to lupus/SLE, so if both are positive, it's quite likely that you have lupus.

ANA results can change over time, and apparently are more likely to fall after you've had lupus for some time and/or as a result of treatment.

Obviously, I don't know what is happening in your case, but it does sound as if you need to get this cleared up!

This link takes you to a very up-to-date review if you want details. It includes the diagnostic criteria for lupus/SLE, and the differential diagnoses. Although it is very technical, you might find it worth skipping some bits to get to the answers you want uptodate.com/contents/diagn...

x

[wendyhoney in reply to whisperit]

Thank you that was very helpful

[Paul_Howard Partner LUPUS UK]

Hi wendyhoney ,

whisperit has shared some excellent information with you about these blood tests.

I think it would be helpful for you to get a referral to a rheumatologist who has a specialist interest in lupus. They will have more knowledge and expertise to help you get the correct diagnosis and treatment plan. If you would like to let me know what area you live in, I can provide you with information about any lupus specialists we may know nearby.

If you'd like more information and advice about how lupus is diagnosed, you can read our blog article on the topic here - lupusuk.org.uk/getting-diag...