How to Diagnose Lupus: 10 Symptoms (Feb 25 Update)
posted in Symptoms In Lupus on August 22, 2023 by
Updated February 28, 2025
Diagnosing lupus is challenging, even for medical professionals. Early diagnosis is crucial for early treatment to reduce inflammation, help patients feel better, and prevent organ damage. We will explore 10 key symptoms healthcare professionals look for when diagnosing lupus.
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NOTE: Johns Hopkins University Press, publisher of The Lupus Encyclopedia, is a nonprofit publisher. If you purchase JHUP books, like The Lupus Encyclopedia, you support projects like Project MUSE.
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October 2024 Update
Understand more about antinuclear antibodies: The medical newspaper, The Rheumatologist, published my article about “A Practical Guide to Autoantibody Testing in Rheumatic Diseases.” Though it is written for healthcare providers, it gives lots of interesting information about these tests.
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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“
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10 Key Symptoms of Lupus
Systemic lupus erythematosus (SLE) can affect any organ of the body. Each SLE patient presents unique challenges, as their symptoms can vary significantly. Therefore, many different types of symptoms can occur. This article discusses 10 key symptoms of lupus. However, there are many more than just these.
Other medical conditions also have 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). If you have a positive ANA, we usually do additional tests for SLE (like chromatin antibody, anti-dsDNA, anti-Smith, C3, C4, Coombs antibody, antiphospholipid antibodies, EC4d, BC4d, anti-SSA, CBC, urine protein/creatinine, etc) as well as for diseases that mimic lupus (like parvovirus, hepatitis C, fibromyalgia, Sjogren’s disease, etc.).
For those living with lupus, following Dr. Thomas’ guidance and adhering to The Lupus Secrets can help a lot.
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. While fatigue is a common symptom of lupus, it is nonspecific. This means that many other things more commonly cause fatigue, like inadequate sleep, not exercising regularly, eating a poor diet, thyroid disease, anemia, and many others. Report fatigue to your health care provider for an adequation evaluation. If fatigue is due to lupus inflammation, there are effective treatments for lupus fatigue. Since fatigue is very nonspecific, it is not part of the systemic lupus classification criteria.
2. Joint Pain and Swelling Symptoms of Lupus
Lupus commonly affects the joints and tendons, causing pain, swelling, and stiffness. These symptoms can mimic arthritis and affect multiple joints. The arthritis of lupus usually is not crippling (as commonly occurs in rheumatoid arthritis). However, some patients can develop a deforming type called Jaccoud’s arthropathy.
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 two or more joints with stiffness, swelling, and tenderness are part of the systemic lupus classification criteria used in SLE research. However, joint pains without inflammation (called arthralgia) are not part of the criteria. Doppler ultrasound of the joints can help identify joint inflammation in SLE patients who do not have notable joint swelling on physical examination.
3. Skin Rashes and Photosensitivity
Many different types of rashes can occur in SLE patients. Along with fatigue and pain, rashes are among the top problems in SLE patients. Hair loss (alopecia) is a common complication. Fortunately, hair loss is treatable. Hair loss is discussed below.
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 can have skin 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 SLE. However, most patients never get the butterfly rash.
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 SLE 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 Lupus Secrets 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 Symptoms of Lupus
Low-grade fevers can occur in lupus. When fever occurs, SLE patients are usually very sick. It is important to ensure there is no active infection whenever a lupus patient has a fever. This should be figured out by a healthcare provider. We advise our patients to contact and see a health provider when they have fever. The primary care doctor or an Urgent Care center are good places to start.
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 also occur in SLE. They are usually painless but 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 SLE patients. When these occur, they should be evaluated immediately in an emergency room. Potential conditions include:
- 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)
- heart attack
- pneumonia
- and more, including milder problems like acid reflux and rib cage pain
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.
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, costochondritis (rib cartilage pain), 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 causes kidney inflammation, which can 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 in the early stages other than increased protein in the urine (proteinuria). 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 chronic kidney disease, 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 a urine sample each time and test it for a random urine protein to creatinine ratio test. If this test is 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. When SKLE affects the nervous system, it is also called neuropsychiatric lupus and 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). This is commonly called dysautonomia or autonomic neuropathy.
Some nerve problems (such as seizures, myelitis, psychosis, and peripheral neuropathy) are part of the classification criteria that can help diagnose lupus.
How to Diagnose Lupus
To diagnose lupus, a thorough evaluation of someone’s medical history, physical examination, and laboratory tests by an experienced doctor is essential. The presence of multiple symptoms and antibodies, such as antinuclear antibodies (ANA), chromatin antibody, anti-dsDNA, anti-Smith, C3, C4, Coombs antibody, and antiphospholipid antibodies can aid in confirming the diagnosis. However, there are no diagnostic criteria for diagnosing SLE. The closest we have are SLE classification criteria, used in research settings. See below.
Antinuclear Antibodies
Understand more about antinuclear antibodies: The medical newspaper, The Rheumatologist, published my article about “A Practical Guide to Autoantibody Testing in Rheumatic Diseases.” Though it is written for healthcare providers, it gives lots of interesting information about these tests.
SLE Classification Criteria
Healthcare professionals may use classification criteria to help diagnose lupus. Currently (as of 2025), there are three different sets of SLE 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, someone with a low platelet count of 105K, discoid lupus, a low C3 level, and a positive ANA test certainly has SLE. However, this person only meets three criteria, while four criteria are required.
On the other hand, someone can meet the criteria for SLE 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 see a health care provider. Diagnosing and treating lupus early are important to help patients feel better and prevent organ damage.
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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.
If you enjoy the information from The Lupus Encyclopedia, please click the “SUPPORT” button at the top of the page to learn how you can help.
What are your comments and opinions?
If you have lupus, what has your experience been? What do you recommend for other patients?
Do you have any questions to ask Dr. Thomas?
Please click on “Leave a Comment” above to comment.
Please support “The Lupus Encyclopedia” blog post page
Click on “SUPPORT” at the top of the page to learn how you can support “The Lupus Encyclopedia“
Dr. Donald Thomas, MD edited and contributed to this post
For more in-depth information on How to Diagnose Lupus: 10 Symptoms (Feb 25 Update):
Read more in The Lupus Encyclopedia, edition 2
Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia
If you enjoy the information from The Lupus Encyclopedia, please click the “SUPPORT” button at the top of the page to learn how you can help.
What are your comments and opinions?
If you have lupus, what has your experience been? What do you recommend for other patients?
Do you have any questions to ask Dr. Thomas?
Please click on “Leave a Comment” above to comment.
Please support “The Lupus Encyclopedia” blog post page
Click on “SUPPORT” at the top of the page to learn how you can support “The Lupus Encyclopedia“
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