How Is Lupus Diagnosed?

What is lupus? 

Lupus is a chronic condition where your body’s immune system attacks tissues and organs. 

9 out of 10 people with lupus are female. 

Black, American Indian and Alaska Native women are 2–3x more likely to get lupus than white women. 

Almost 1 in 2 people with lupus are misdiagnosed at first

It can take an average of 5 years from first seeking medical help to getting a lupus diagnosis. 

Why is it hard to diagnose lupus?

Because symptoms:

• Come and go

• Can be mild to severe

• Affect multiple body parts and organs

• Can be non-specific, such as fatigue and fever

How does lupus get diagnosed?  

There isn't a specific test that can tell you if you have lupus, so healthcare providers (HCPs) use a combination of physical exams and tests to diagnose lupus. 

Physical exam

Your HCP will ask about symptoms including:

• Fatigue

• Joint pain, stiffness and swelling

• Rashes, especially on the face, known as a “butterfly rash”

• Fever

• Skin lesions

• Shortness of breath

• Chest pain

• White or blue-colored fingers and toes from stress or cold

• Dry eyes or dry mouth

• Swelling in legs or around eyes

• Confusion or forgetfulness

Laboratory tests

You may be given the following blood or urine tests:

• Complete blood count (CBC): Red and white blood cells, platelet and hemoglobin levels may be low with lupus.

• Kidney and liver tests: Lupus can damage your kidneys or liver, so these tests can check if they are functioning well.

• Erythrocyte sedimentation rate: A test to see how quickly red blood cells fall to the bottom of a test tube. A high erythrocyte sedimentation rate could be one clue that you have lupus.

• Antibody tests: Antinuclear antibodies (ANA) test looks for antibodies that attack normal cells. A positive test might indicate lupus.  

• Urinalysis: Checks kidney function. Elevated protein with or without elevated red blood cell levels in the urine could mean lupus is attacking the kidneys.

Biopsies

If your lab tests show a concern, your HCP may take a piece of tissue or sample of cells in a procedure (called a biopsy) to check for damage or inflammation from the immune system. 

The most common biopsies for people with lupus are the skin and kidneys. 

Imaging

Lupus can affect your lungs and heart, so your HCP may want to make sure they are healthy by doing a:

• Chest X-ray: Uses radiation to take a picture of your chest, lungs and heart. You may have fluid or inflammation in the lungs if there are shadowed areas. 

• Echocardiogram: Uses sound waves to make images of your heartbeat and look at heart valves. The results could show a problem with the valves, heart muscle or pericardial effusion — inflammation in the sac surrounding the heart.

Information is key

Your HCP needs as much information about your symptoms and health status as possible to make a timely and accurate diagnosis. 

Advocate for yourself and get a second opinion if you feel you aren’t being heard! 

Resources

Lupus Foundation of America

This educational resource was created with support from GlaxoSmithKline and Novartis.