Lupus symptoms are similar to those of many other conditions, so getting a diagnosis can take time and is often quite complex. However, receiving a diagnosis is important because it helps explain your symptoms and gives your doctor a clearer direction for treatment. 

Even though diagnosing lupus is challenging, there are things you can do to help speed up the process. Tracking your symptoms is just one example.

This guide explains how lupus is diagnosed, including the tests involved and ways to make the process more straightforward.

What is lupus?

Lupus, also known as systemic lupus erythematosus (SLE), is an autoimmune condition that affects multiple parts of the body and causes a range of symptoms.

When working normally, the immune system protects you by attacking foreign pathogens in your body, such as bacteria and viruses. In SLE and other types of lupus, the immune system misfires and attacks healthy cells in the organs and tissues, causing damage.

Most people with lupus experience two phases of the condition:

• Flare-ups—periods when the immune system is more active, which can lead to new or worsening symptoms
• Periods of remission—when symptoms become milder or disappear

Some of the most common lupus symptoms include:

• Fatigue
• Joint pain, swelling, and stiffness, particularly in the morning
• Skin rashes, including a “butterfly rash” across the cheeks and nose or scaly rashes on other parts of the body
• Sensitivity to sunlight
• Hair loss
• Fever
• Mouth sores
• Shortness of breath
• Headaches
• Brain fog, confusion, or memory problems
• Swollen glands
• Changes in finger or toe color in response to cold or stress (Raynaud’s phenomenon)
• Swelling (edema)

How lupus is diagnosed

A lupus diagnosis is not based on a single blood test or scan, and since the condition varies so much from person to person, it can be hard to identify.

Here are some of the most common diagnostic tests a doctor can order to confirm (or rule out) lupus as the cause of your symptoms.

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Blood tests for lupus

Complete blood count

A complete blood count (CBC) is a blood test used to measure the number of blood cells in your body, including red blood cells, white blood cells, and platelets. 

Many people with lupus experience anemia, which is caused by a low red blood cell count. They can also have low white blood cell or platelet counts if their immune system targets their blood cells.

An irregular CBC is not a definitive sign of lupus, but it is a signal to continue exploring potential causes.

Erythrocyte sedimentation rate (ESR)

An ESR blood test measures inflammation in the body by looking at how quickly red blood cells settle at the bottom of a test tube over the course of an hour. In people with lupus, red blood cells tend to sink faster than expected.

While an ESR test cannot diagnose lupus on its own, it can help doctors identify inflammation and assess disease activity alongside other symptoms and test results.

C-reactive protein test (CRP)

A CRP blood test measures the amount of liver proteins in the blood to assess inflammation levels.

In people with active infections or autoimmune conditions like lupus, the CRP test will typically come back higher than average.

Antinuclear antibody test (ANA)

People with lupus develop autoantibodies that target and attack healthy cells. An ANA blood test is used to detect these autoantibodies. The vast majority of people (up to 97%) with systemic lupus have a positive ANA test.

An ANA blood test is not a definitive test for lupus. People with or without the condition can have a positive result. Because of this, doctors use ANA results alongside your symptoms, medical history, physical examination, and other blood tests when assessing for lupus.

Laboratory tests for lupus

Urinalysis

Some people with lupus develop lupus nephritis, inflammation of the kidneys caused by damage to the healthy kidney cells. High levels of proteins in your urine indicate that your kidneys are not working as they should. 

Urinalysis can also rule out other conditions or infections that may be causing your symptoms.

Imaging tests for lupus

If your symptoms indicate lupus is affecting your heart or lungs, imaging may be done to check for damage or other underlying causes. Examples include:

Chest X-ray

Your doctor might order a chest X-ray if you have been experiencing ongoing shortness of breath or other respiratory symptoms.

During this test, X-ray images will be taken to look for signs of irritation or inflammation in the lungs that could be caused by a lupus flare.

Echocardiagram

Some people with lupus experience cardiac symptoms, which can range in severity. An echocardiogram is a type of imaging that uses sound waves to create pictures of your heart.

This test can help identify damage or pre-existing anomalies with your heart chambers and valves, and monitor the heart’s general function.

Biopsies for lupus

Depending on your symptoms, two types of biopsies can help diagnose lupus:

Skin biopsy

Skin biopsies are commonly performed on people with suspected cutaneous lupus, a condition that primarily impacts the skin.

A portion of your skin will be removed under local anesthetic and studied at a cellular level to look for signs of lupus-related damage.

Kidney biopsy

If your doctor suspects you have systemic lupus, they may recommend a kidney biopsy. A kidney biopsy involves collecting kidney cells to check for damage consistent with lupus.

During this procedure, you will be put under sedation or general anesthesia. A long needle will be used to collect the sample.

How to make the diagnostic process easier

Diagnosing lupus takes time. Delays are common due to long wait times to see specialists and having to rule out other possible conditions along the way.

However, there are things you can do to help speed things along:

• Educating yourself about lupus: Learning more about the condition and its symptoms is essential for being able to advocate for yourself and get quality care.

• Tracking your symptoms: The more information you have about your symptoms, like your fatigue levels, the presence of rash, and joint pain, the easier it is to share patterns with your doctor and advocate for testing.

• Take a lupus self-assessment quiz: Taking a self-assessment quiz can help you better understand whether your symptoms align with lupus. You can share the results with your doctor to support the diagnostic process.

• Asking for a rheumatologist referral: If possible, asking your doctor for a referral to a rheumatologist can help support the lupus diagnosis process.

Bring a clearer picture to your next appointment

Diagnosing lupus can often be a long and complicated process. There is no single test that can confirm lupus on its own, and symptoms vary widely from person to person. And since many lupus symptoms overlap with other conditions, it can be challenging to pinpoint.

Symptoms can come and go, so they may not be present during appointments. It can take time for your doctor to gather enough observations and test results to build a clear picture.

Because of this, tracking your symptoms and potential triggers over time can be a huge help. This is easy with the Human Health app. With all the information and patterns in one place, it’s easy to share your experiences with your doctor—and there’s no need to rely on memory.

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Frequently asked questions

How does lupus feel every day?

How lupus feels from day to day can dramatically differ depending on the person and the severity of their condition.

If you are actively experiencing a flare, symptoms can be intense and sometimes debilitating. If you are in remission, you can have mild or no symptoms at all.

Because of the cyclical nature of lupus, close monitoring and health tracking help you stay on top of your symptoms and communicate them clearly to your doctor.

What are the early symptoms of lupus?

Early symptoms of lupus vary from person to person. The most common include fatigue, fever, joint pain or swelling, and a malar (butterfly) rash across the face.

How long does it take to get diagnosed with lupus?

Research in Canada found that it can take up to 10 appointments with a specialist to get a diagnosis, while the Lupus Foundation of America says it takes nearly six years on average. Many people get an incorrect diagnosis before they are correctly diagnosed with lupus.

Disclaimer: Human Health is a health tracking platform and does not provide medical advice, diagnosis, or treatment. The information in this guide is for educational purposes only and is not a substitute for professional medical care. Always consult your doctor or healthcare provider with questions about your health.

Sources:

1. Systemic lupus erythematosus, MedlinePlus
2. Systemic lupus erythematosus (lupus), The National Institute of Arthritis and Musculoskeletal and Skin Diseases
3. Lupus, Mayo Clinic
4. Erythrocyte Sedimentation Rate (ESR), MedlinePlus
5. Lab tests for lupus, The Lupus Foundation of America
6. Lupus nephritis, The National Kidney Foundation
7. Echocardiogram, Johns Hopkins Medicine
8. Kidney biopsy, Cleveland Clinic
9. Reducing time to diagnosis, The Lupus Foundation of America
10. Lupus, Cleveland Clinic
11. Spotlight on lupus, Arthritis Research Canada
12. Lupus Facts and Statistics, The Lupus Foundation of America