How Is Lupus Diagnosed?

Medically reviewed by Stella Bard, MD

Lupus is a chronic autoimmune condition that causes inflammation throughout the body. When a person develops an autoimmune condition, their immune system attacks healthy tissues and organs by mistake. Inflammation related to lupus can affect any part of the body, including the kidneys, lungs, heart, circulating blood cells, skin, and muscles.

Symptoms of lupus look different from person to person and mimic other health conditions—which is why the condition can be so difficult to diagnose. Your symptoms may also come and go. This cycle is known as flares (periods where you have highly active symptoms) and remission (periods where you have little to no symptoms).

At this time, no single test can tell if a person has lupus. As a result, your healthcare provider will likely use several tests to make an accurate lupus diagnosis. The diagnostic process will often include an intake of your personal and family medical history, a physical exam, lab tests, and a biopsy.

Medical History

If you notice symptoms of lupus, it’s a good idea to visit your healthcare provider for proper testing. During your appointment, your provider will take a thorough medical history to better understand your symptoms, lifestyle habits, and overall health.

They may ask you several questions, including:

• What are your exact symptoms?

• When did you first start noticing symptoms?

• Do you have any other autoimmune conditions?

• Does anyone in your family have a history of lupus?

• Are you currently taking any medications?

• Do you drink alcohol or smoke cigarettes?

• Have you experienced any major life changes recently?

Related: Lupus and the Sun

Physical Exam

After learning about your medical history, your provider will perform a physical exam. Before checking for specific symptoms, it’s standard practice for your provider to measure your vitals, such as taking your temperature, checking your blood pressure, and monitoring your heart rate.

They may also check for certain lupus symptoms, including:

• Skin lesions or rashes

• Scarring or non-scarring patchy alopecia—a condition that causes hair loss

• Edema (fluid retention) in your legs

• Ulcers in the mouth or nose

• Joint pain or tenderness

Lab Tests

If your healthcare provider suspects signs of lupus or needs more information, they will usually order routine lab tests to help with the diagnosis process. These tests often require samples of your blood and urine.

Your provider may order any of the following lab tests:

Your provider may also order antinuclear antibodies (ANA) to screen for lupus. When the immune system attacks the body’s own cells, the body produces antibodies—proteins in the immune system that help fight infections. The ANA test can show if your body has started producing lupus-related antibodies. Most people who are living with lupus tend to have a positive result on the ANA test.

However, it’s important to note that a positive ANA test on its own is not enough to confirm that you have lupus. If your ANA test is positive, your healthcare provider will order more lab tests that are specific to lupus. These exams specifically test for proteins such as anti-double stranded DNA (anti-dsDNA) antibodies, anti-smith, and antiphospholipid antibodies.

Biopsy

A biopsy is a minor surgery to remove a sample of tissue from your body. Typically, your provider will take a tissue sample of your skin or kidney. But, they can perform a biopsy on any organ in the body.

Your provider or biopsy lab technician will view the sample of your tissue under a microscope for signs of an autoimmune disease, including lupus. During their examination, they will likely test the tissue for inflammation and organ damage.

Related: How Is Lupus Treated?

Diagnostic Criteria

Over the years, researchers developed different classification criteria to accurately diagnose lupus. The purpose of these classification criteria was to:

• Diagnose and categorize the severity of lupus in people with the condition

• Help healthcare providers understand key features of the disease for future research and clinical practice

Healthcare providers have not agreed on or accepted one standard diagnostic criteria to use for lupus. As a result, there is not a specific set of diagnostic criteria for the condition, making lupus a bit difficult to diagnose.

However, most providers decide to use the EULAR/ACR classification criteria—a set of criteria that was developed in 2019 by the European Alliance of Associations for Rheumatology (EULAR)/American College of Rheumatology (ACR).

The first criterion for a lupus diagnosis is to have a positive ANA test result. After that, a person who is being tested for lupus must meet additional criteria to receive an accurate diagnosis for lupus.

Each of the following categories is given a score between 2 and 10 points. Your healthcare provider can diagnose you with lupus only if you have 10 or more points. These categories include:

• Immunologic: Test results for antiphospholipid antibodies, complement proteins, and SLE-specific antibodies

• Constitutional: Experiencing fatigue, fever, and weight loss

• Hematologic: Issues with the blood and blood-forming tissue

• Neuropsychiatric: Having brain or nervous system problems such as seizures or psychosis

• Mucocutaneous: Problems relating to the skin and mucous membranes, including ulcers or alopecia

• Serosal: Concerns with the chest such as fluid buildup or heart problems

• Musculoskeletal: Feeling joint or muscle pain

• Renal: Kidney-related concerns such as blood, protein, or pus in the urine

Keep in mind: the EULAR/ACR classification criteria aren’t perfect and have their own set of limitations. Because lupus affects each person differently, no one set of criteria is inclusive to everyone’s experience with the condition. This speaks to the difficulty of receiving a lupus diagnosis in the first place.

However, the EULAR/ACR classification criteria can help your provider get a better understanding of your symptoms, test you for related conditions, and learn how to move forward with treatment options, if needed.

Related: Living With Lupus

Screening for Related Conditions

Lupus is difficult to diagnose because symptoms show up in different ways that often mimic other autoimmune and health conditions. This is why lupus is often called “the great imitator.”

As a result, there are a number of health conditions that your healthcare provider may also test you for during the lupus diagnostic process. These conditions include, but are not limited to:

• Rheumatoid arthritis

• Mixed connective tissue disease

• Undifferentiated connective tissue disease

• Systemic sclerosis

• Sjögren’s syndrome

• Vasculitis

• Behçet syndrome

• Fibromyalgia

Related: What I Wish I Knew Before Starting Lupus Treatments

A Quick Review

Lupus is a chronic autoimmune condition that causes inflammation in your body. The condition is difficult to diagnose for two reasons: lupus affects each person differently and healthcare providers don’t agree on a single set of diagnostic criteria.

For this reason, your healthcare provider will use a variety of measures to learn about your condition and symptoms. These tests will likely include an intake of your medical history, a physical exam, blood or urine tests, and a biopsy.

If you notice symptoms of lupus or have a family history of the condition, it’s a good idea to get tested. There is no cure for lupus, but receiving an early diagnosis can help you get started on a treatment plan that works best for you and your lifestyle. 

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