What is a lupus test?

[Chapter]

I have noticed people saying that they have tested negative or positive for Lupus, and positive or negative ANA. What I understand is that a positive dsDNA is significant for SLE, but a lot of Lupus patients do not have that. What test is it that people are referring to as positive or negative Lupus.

[Thaddeus]

Hello Chapter

This all gets very confusing and as you know we are not always in the best frame or state of mind to process confusing information.

There is no one definitive test for lupus and many of us who have had a solid diagnosis will then have a doctor backtrack or modify that diagnosis. As test for specific proteins and anti-bodies improve so this situation will get worse. What a decade ago would have been lupus is now APS + Sjogrens with lupus like symptoms, etc etc.

Better to think in terms of a Lupus spectrum, the ANA test is central, but like most tests not 100% reliable and a persons ANA status can change from test to test.

More important is the right doctor who cares and gets you. Sadly this means that many people will wait years before getting any sort of diagnosis at all, and will live in a purgatory of mis information pain and self doubt.

good luck.

[Chapter]

Thank you Thaddeus for your response. That is what I thought too, but I do get confused when people say they have had a positive Lupus test, and maybe a little jealous too ??. I have my required ANA, rash, pain, headaches, confusion, sore achey body but never had a "positive" Lupus test. I am lucky that since my first obvious flare (not counting the years of undiagnosed ailments) I have been treated for Lupus without anyone writing down it that I have Lupus. They just say "Lupus Like", which is fine with me as long as they are working on a plan. Thanks.

[Hidden]

Hi,

Yes that gets me every time when people say I've been tested for lupus but don't have it - there isn't a test as yet. Why don't people talk about the 11 lupus diagnosis criteria which isn't all based on bloods - just looked it up, only 3 are based on lab tests. Its the ACR (American college of rheumatology) criteria for diagnosis. The presence of 4 of the criteria confirms the diagnosis, which is why I was diagnosed with lupus, I have 5. Do people know about this? Xx

[eejit]

Hi I'm in the same boat my ANA test was boarder line but while I was looking up symptoms etc up to 5% of people with lupus may never have a positive ANA test. I'm lucky that mt remuy and gp are great and have a ongoing plan for looking after me they both say as far as they are concerned they are treating me for lupus! I also am going for steroid injections into mt shoulder joints on Wednesday morning I am lucky that I've found two health professionals who care!

Good luck and god bless

[Hidden]

Hello chapter

Yes I agree it's all confusing when so many different docs have different opinions when it comes to a positive test result.

My rheumatologist always tells me not too worry about the positive ana blood test as mine always comes back positive but my symptoms stay the same, like you achy sore muscles, headaches and the forever fatigue.

A positive blood result does not mean you have lupus but I believe it does mean that there is something not quite right which is why we hurt all over and fell rubbish most days.

So my rheumatologist tests me every three months to make sure my symptoms don t develope into something more serious but he does say as with you that it's lupus like but thankfully mild and it could stay mild for the rest of my life.

I don t think at the moment there is any positive test for lupus and the diagnosis is made purely on the symptoms we get.

[Nightjar]

Thanks Guildford,

I hadn't come across the ACR criteria for diagnosis before. Lots of good up-to-date info these websites.... xxx

See: lupusresearchinstitute.org/...

See also: rheumatology.org/practice/c...