I feel we should be specific here. ANA negative Lupus is very rare, so rare many doctors don’t even acknowledge it exists. So 20% of those with Lupus will *not* be ANA negative. I’ve read the number is closer to 1/2% and maybe up to 2%

What is common though is fluctuating ANA! I had 1:320 one week and a negative test another week. Drugs like prednisone and Plaquenil will lower an ANA. But this isn’t the same as negative ANA Lupus. Once you test positive for ANA it is in your record as they have officially confirmed your body is producing antibodies that attack your tissues. It is a very significant test. If you never test positive for ANA and don’t test positive for other antibodies it means they are finding no evidence that your body is attacking itself and damaging your tissues....which is the definition of an autoimmune disease basically

Many people have to have the ANA test done more than once to catch it. It helps to take the test when you’re feeling sick. Do not have the test done when taking steroids for any reason as it will lower your test result

But if you’ve repeatedly had ANA tested over time and there’s never been any sign of antibodies, its less likely your symptoms are caused by lupus or AI disease

I hope that makes sense as I know this is all so confusing

Skin biopsy is an option if you get sores or rashes. Many are diagnosed that way initially since they can find microscopic evidence of inflammation in the skin sample. It doesn’t always work and isn’t an option for some but a route to consider

ANA testing is where Lupus diagnosis usually starts. Almost 100% of those with Lupus will have a positive ANA. A small fraction can have negative ANA Lupus but that is very very rare, I believe the estimate is 1/2% - 2% have ANA negative Lupus. These people *will* test positive for other antibodies tho so they still confirm the disease by blood test

Those suffering Lupus Nephritis can have a biopsy of the kidney done to confirm Lupus. Doctors do not order this test lightly! Usually they already diagnosed Lupus or there is a documented issue with kidney function and they want to confirm & gauge the progression. If you don’t have positive blood test results or a severe kidney issue this procedure won’t likely be offered

Evidence of Lupus is often 1st caught by irregular blood counts during a routine blood test. The majority with Lupus will have low counts of red, white or platelets during the course of their disease. For instance I’ve never had a platelet count in the normal range. That was the earliest clue something was wrong. After 30 years of low platelets I finally got a diagnosis

They also test your “sed rate” and “CRP” which are blood tests that show inflammation in the body. A diagnosis doesn’t require them to be high but it’s common for them to spike during a flare

C3 and C4 are other blood tests run. These often run low with Lupus. Like with the CRP, a diagnosis doesn’t require them to be low but they’re usually checked as they can be a significant clue!

So there are multiple tests they use to find clues. If these have all been run and nothing is abnormal then you’re unlikely to be diagnosed

Lupus is called the great imitator because it’s symptoms are so similar to so many other diseases. If you haven’t been tested for thyroid issues that is definitely something to checked out

Good luck! So many here understand what a long road it is to figure out health problems

AVISE lupus testing checks your blood cells for “footprints” of the disease. Thats where mine was found. Ask your doctor about it!

I do hope it helps people @A MyLupusTeam Member I remember going crazy trying to understand what these tests meant when I started down the road to diagnosis

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@A MyLupusTeam Member Thank you! Great explanation

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