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How to Diagnose Lupus: 10 Symptoms

Lupus is a challenging autoimmune disease that can appear differently in each individual. Early diagnosis is crucial for managing symptoms effectively and preventing complications. In this article, we will explore 10 key symptoms that healthcare professionals look for when diagnosing lupus. Understanding these symptoms can help individuals recognize the potential signs of lupus and seek timely medical evaluation.

Donald Thomas, MD author of The Lupus Encyclopedia for Gastrointestinal symptoms in lupus blog post

This blog on “How to Diagnose Lupus: 10 Symptoms” was edited and contributed to by Donald Thomas, MD; author of “The Lupus Encyclopedia.” Parts of this blog post come from “The Lupus Encyclopedia: A Comprehensive Guide for Patients and Health Care Providers, edition 2

NOTE: Other medical conditions often present many of these symptoms. If you have these symptoms and think you may have lupus, ask your healthcare provider to test you for anti-nuclear antibody (ANA). When the result is positive then we usually do other tests for lupus (like chromatin antibody, anti-dsDNA, anti-Smith, C3, C4, Coombs antibody, antiphospholipid antibodies, EC4d, BC4d, anti-SSA, CBC, urine protein/creatinine, etc) and diseases that mimic lupus (like parvovirus, hepatitis C, fibromyalgia, Sjogren’s disease, etc.).

If you have lupus, make sure to take Dr. Thomas’ advice and abide by The Lupus Secrets. Do everything on his list, and he promises that you will do better with your lupus compared to if you did not do them. If you are newly diagnosed with lupus, or if you have lupus that is uncontrolled, and you are not sure what to do, read his blog post about what he would do if he had lupus and “how to succeed after having a lupus diagnosis.”

1. Persistent Fatigue

Unexplained and ongoing fatigue that doesn’t improve with rest is one of the early signs of lupus. The fatigue experienced by lupus patients is often severe and can significantly impact daily activities. Though fatigue is very common in lupus, it is a nonspecific finding. This means it is not part of the systemic lupus classification criteria.

2. Joint Pain and Swelling

Lupus commonly affects the joints, causing pain, swelling, and stiffness. These symptoms can mimic arthritis and may affect multiple joints. The arthritis of lupus usually is not crippling (as commonly occurs in rheumatoid arthritis). However, a small number of patients can develop a deforming type called Jaccoud’s arthropathy.

It is important to realize that all the systemic autoimmune diseases (like rheumatoid arthritis, Sjogren’s disease, scleroderma, polymyositis, and vasculitis) can cause inflammatory arthritis and a positive ANA. Therefore, doctors must consider all these possibilities in ANA-positive patients who have joint pain.

Inflammatory arthritis affecting more than 2 joints with joint stiffness, swelling, and tenderness are part of the systemic lupus classification criteria to help diagnose systemic lupus. However, joint pains without inflammation in the joints (called arthralgia) are not part of the criteria. Doppler ultrasound of the joints can help identify joint inflammation in lupus patients who do not have notable joint swelling on physical examination.

3. Skin Rashes and Photosensitivity

A common sign of lupus is the characteristic “butterfly rash“. Also called a malar rash, it appears across the cheeks (malar area) and nose. Additionally, lupus patients may experience rashes on other areas of the body, which worsen upon sun exposure.

Some patients with systemic lupus mistakenly question their diagnosis of lupus because they do not get the butterfly rash. However, this rash only occurs in around 30% of systemic lupus patients. It is one of the most common photos that people see of lupus (like the man with the malar rash in the image on this blog post) because it is an easy photo to take and is so typical of lupus patients.

It is important that doctors ensure that red facial rashes are not due to lupus mimics. For example, rosacea, seborrheic dermatitis, and tinea faciei can look just like a lupus rash, but the causes and treatments are very different. Seeing a good medical dermatologist (rather than a cosmetic dermatologist) can be very helpful to figure this out.

Note that ultraviolet light damages the skin cells and causes inflammation and increased immune system activity in all lupus patients, even in those who do not get rashes. Everyone with lupus should abide by strict ultraviolet light protection. Make sure to download the UV protection advice from The Lupus Secrets page. Just click on the image at the bottom of the page that is titled “UV Protection.”

Both the malar rash and sun-induced lupus rashes are part of the lupus classification criteria.

4. Fever and Inflammation

Frequent low-grade fevers is a common sign of lupus. When fever occurs, the lupus patient is typically very sick. It is very important to ensure there is no active infection whenever a lupus patient has a fever. This should be figured out by a healthcare provider.

Fever is not part of the systemic lupus classification criteria.

5. Raynaud’s Phenomenon

Raynaud’s phenomenon, characterized by fingers and toes turning white or blue in response to cold or stress, is often associated with lupus. However, it can be seen in any of the systemic autoimmune diseases (especially scleroderma). It can be present even when systemic lupus is in remission because it can be due to the arteries being permanently smaller than normal and due to the nerves that affect the arteries being overactive with cold and stress exposure.

Drugs that calm down or suppress the immune system usually do not help Raynaud’s. It is treated by keeping warm and learning how to cope with stress. When these measures are ineffective, blood pressure drugs that open up the arteries (like calcium channel blockers), some anti-depressants (like SSRIs), and even drugs that help erections (like sildenafil, Viagra) can help.

It is not part of the classification criteria for lupus.

6. Mouth and Nasal Sores

Ulcers and sores in the mouth and nasal passages (also called mucosal ulcers) can be indicative of lupus, and may be used in diagnosing lupus. They are usually painless. However, sometimes they can be painful.

Mucosal ulcers are part of the classification criteria for lupus.

7. Hair Loss

Alopecia, commonly known as hair loss, is a frequent symptom experienced by individuals with lupus. Hair loss can either be permanent (called scarring alopecia) or reversible (called nonscarring alopecia). Nonscarring alopecia from lupus grows back when lupus is brought under control.

However, lupus patients often develop hair loss due to nonlupus causes. It is incredibly important to figure out the cause of hair loss in order to figure out how to treat it. Getting the help of a medical dermatologist (rather than a cosmetic dermatologist) is invaluable in figuring this out.

If you have hair loss, see Dr. Thomas’ video about the causes of hair loss in lupus and what to do about it.

Nonscarring alopecia and alopecia due to discoid lupus are part of the lupus classification criteria.

8. Chest Pain and Shortness of Breath

Inflammation in the lining of the heart and lungs can lead to chest pain and breathing difficulties in lupus patients. When these occur, they should be evaluated immediately in an emergency room. Dangerous conditions such as blood clots, heart attacks, and lupus lung inflammation could cause these symptoms. However, other causes such as pneumonia also need to be considered, and an emergency room is the best place to figure these things out.

When Dr. Thomas has a lupus patient with chest pain or shortness of breath, and urgent, dangerous causes have been excluded at the emergency room, he usually asks for the help of both a cardiologist (heart specialist) and a pulmonologist (lung specialist) to help figure out what is going on. The list of lupus causes is long and includes blood clots (pulmonary embolism), lupus lung inflammation (pneumonitis), pleurisy or pleural effusions (inflammation around the lining of the lungs), pericarditis (inflammation around the lining of the heart), myocarditis (inflammation of the heart muscle), and more.

However, non-lupus causes are also common and are not treated with lupus medications. This is why it is so important to also see a lung and heart specialist. Common non-lupus causes include fibromyalgia, being overweight, deconditioning (out of shape), asthma, acid reflux, and much more.

When lupus causes inflammation around the heart (pericarditis) or lungs (pleurisy), these are part of the classification criteria for systemic lupus.

9. Kidney Involvement

Lupus can cause inflammation in the kidneys, leading to kidney problems that may be detected through urine tests. Around 40% of systemic lupus patients develop inflammation of the kidneys (lupus nephritis). Lupus nephritis does not cause any symptoms at all in the early stages other than increased protein in the urine. This is when we want to catch it. When we catch it early and treat it right away, we are more likely to get lupus nephritis into remission. Treatments for lupus nephritis (like Benlysta and Lupkynis) are much better today than even just a few years ago. If it goes undiagnosed for a while, then treatment can be much harder and increase the risk of kidney failure and the need for dialysis or a kidney transplant.

This is why we ask patients to see their rheumatologist every 3 months even if they feel perfectly fine. We want a urine sample each time and test it for a random urine protein to creatinine ratio test. If this test is high (greater than 500 or greater than 0.5, depending on the lab) on two occasions, we want a kidney biopsy.

Having lupus nephritis is one of the classification criteria for lupus.

10. Neurological Symptoms

Lupus can affect the nervous system, resulting in headaches, dizziness, memory problems, and seizures. Lupus can affect all parts of the nervous system, including the brain, spinal cord, and peripheral nerves. It can even affect nerves that we have no control over, such as those that regulate the heartbeat and blood pressure (nerves of the autonomic nervous system). When lupus affects the nervous system, it is also called neuropsychiatric lupus.

Some nerve problems (such as seizures, myelitis, psychosis, and peripheral neuropathy) are part of the classification criteria that can help diagnose lupus.

Diagnosing Lupus

Diagnosing lupus requires a comprehensive evaluation of a person’s medical history, physical examination, and laboratory tests. The presence of multiple symptoms and antibodies, such as antinuclear antibodies (ANA), can aid in confirming the diagnosis.

Healthcare professionals may use classification criteria to help diagnose lupus. Currently (as of 2023), there are three different sets of classification criteria (the 1997 ACR criteria, the 2012 SLICC criteria, and the 2019 ACR/CULAR criteria). These criteria were developed to enter systemic lupus patients into research and were not designed to be used as diagnostic criteria. Nonetheless, they are often used to help diagnose lupus patients.

However, someone can have systemic lupus and not meet criteria (for example, if someone has a low platelet count of 105K, discoid lupus, a positive Smith antibody, and a positive ANA test). On the other hand, someone can meet the criteria for systemic lupus yet not have lupus (for example, a rheumatoid arthritis patient who has inflammatory arthritis, pleurisy, a low white blood cell count, and a positive ANA test, all from her RA). It takes a skilled doctor to make the correct diagnosis by putting all the pieces of the puzzle together (history, physical exam, and test results).

When to Seek Medical Attention for a Lupus Diagnosis

If you experience any of the mentioned symptoms persistently, especially if they worsen over time or significantly impact your daily life, it is essential to seek medical attention promptly. Diagnosing and treating lupus early are crucial for managing lupus effectively and improving long-term outcomes.

Recognizing the key symptoms of lupus is vital for early diagnosis, to be sure of appropriate management of this complex autoimmune disease. Persistent fatigue, joint pain, skin rashes, and other signs should prompt individuals to seek medical evaluation. A comprehensive assessment by healthcare professionals, including laboratory tests, is necessary to confirm a lupus diagnosis. If you suspect you may have lupus, don’t delay seeking medical attention. Understanding the symptoms and seeking timely care can help individuals with lupus lead healthier lives through proper management and treatment.

For more in-depth information on how to diagnose lupus in greater detail:

Read chapter 1 of The Lupus Encyclopedia, edition 2

It includes the three classification criteria most commonly used by lupus experts, including the 2019 ACR/EULAR criteria for SLE. 

Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia.

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Dr. Donald Thomas, MD edited and contributed to this post

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