Early Signs of Lupus: What to Look For (May 2025 Update)
posted in All on December 11, 2024 by
Updated May 28, 2025
We must diagnose systemic lupus erythematosus (SLE) soon after symptoms begin. The quicker we treat SLE, the less likely it is to cause organ damage. We are also less likely to have to use steroids, like prednisone, which cause side effects in most patients who are treated with them. Unfortunately, on average, it takes 4-7 years after the onset of symptoms before SLE is diagnosed per surveys by the Lupus Foundation of America and Lupus UK. Long delays in a diagnosis of SLE have also been shown in high-quality rheumatology clinics. These delays in diagnosis increase the risk of permanent organ damage that could have been prevented with early treatment.
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.
Part of the reason for delayed diagnoses is that many of the symptoms of SLE are nonspecific and seen in many other disorders. Affected people may blame problems like fatigue and aches on stress or lack of sleep. Evaluations at the early stages may reveal nondiagnostic test results.
However, patients who seek medical care early on and who are persistent in seeking medical care are most likely to get early, much-needed treatment. This article focuses on the early signs of lupus and raises awareness of this often misunderstood condition.
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This blog post article 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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What Is Lupus?
Lupus, short for systemic lupus erythematosus (SLE), causes the immune system to attack healthy tissues. This causes inflammation that can affect any body organ, like the skin, joints, kidneys, heart, lungs, and brain. SLE affects each person differently, recognizing the early signs can help start treatment quicker, reducing the risk of organ damage and improving quality of life.
Fatigue – The Most Common Early Sign
One of the earliest and most prevalent signs of lupus is chronic fatigue.
Joint and Muscle Pain
Joint and muscle pain are common early symptoms of lupus. Inflammation often affects the small joints in the hands, wrists, and feet.
Skin Rashes and Mouth Sores – A Key Indicator
One of the hallmark early signs of lupus is a butterfly-shaped rash that appears across the cheeks and nose, known as a malar rash. However, only 30% of SLE patients get this rash. Many other types of rashes can occur. Mouth sores can occur as an early symptom of SLE. See my other article about cutaneous lupus: https://www.lupusencyclopedia.com/hair-and-skin-problems-in-lupus/
Photosensitivity (Ultraviolet Light Sensitivity)
UV light causes increased systemic inflammation in all SLE patients, though some (such as those who are anti-SSA positive) are more sensitive than others. While only around 30% of patients developed a rash with sun exposure, UV light can cause inflammation in any organ, such as the kidneys. All patients should abide by strict UV light protection as part of their therapy. Print out my free handout on UV light protection to help guide you: https://www.lupusencyclopedia.com/lupus-secrets/#handouts
Unexplained Fever
Here is an excerpt from “The Lupus Encyclopedia: A Comprehensive Guide for Patients and Health Care Providers about fever in SLE (copyright Johns Hopkins Press):
Normal temperature varies a lot from person to person, ranging from 96.0°F to 100.8°F when taken orally (thermometer placed under the tongue). It also varies based on the time of day. Body temperature is usually lowest at 6:00 a.m. and highest at 6:00 p.m. You have a fever if your oral temperature in the early morning is higher than 98.9°F or your late afternoon temperature is higher than 99.9°F.
Of people with SLE, 50% to 70% will develop fever as a problem. Fever due to lupus inflammation generally responds well to acetaminophen (Tylenol) and non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen or naproxen, and steroids (chapter 7).
However, you should never automatically blame a fever on SLE. It is crucial to consider infection as a possible cause because people with SLE are at increased risk of infections (chapter 22). Infections in people with SLE may require antibiotics and medicines that decrease fever. People with SLE who have a fever, especially if on immunosuppressants such as prednisone, should always see their physicians right away to ensure it is not due to an infection. It can be a mistake to wait and see if the fever resolves on its own. Illnesses due to a minor infection such as colds are frequent and may not require antibiotics. However, it is better to leave this decision to a health care provider, especially since infection is one of the leading causes of death in SLE.
Hair Loss
Hair loss is another early sign of lupus, and it can be distressing. However, therapies can stop hair loss in many cases and even reverse hair loss. See my video I made along with the Lupus Foundation for a full explanation and practical advice on hair loss: https://www.lupusencyclopedia.com/hair-loss-and-lupus/
Chest Pain and Breathing Difficulties
Lupus can cause inflammation in the lining of the lungs (pleuritis) or the heart (pericarditis). This can result in chest pain that typically worsens when taking a breath in (pleuritic chest pain). Many other types of lung and heart issues can occur. Click on the links in the first sentence of this section.
Kidney Issues
Approximately 40% of SLE patients develop kidney inflammation (lupus nephritis). Excessive protein in the urine (proteinuria) is the earliest abnormality we see with lupus nephritis. Everyone with new-onset proteinuria should be evaluated for SLE as a potential cause vs other causes of kidney disease.
Nerve Involvement, Cognitive Issues, and Mood Swings
Lupus can affect the nervous system, leading to cognitive problems and mood swings. This can lead to brain fog, memory lapses, and difficulty concentrating. Other nerve symptoms, like tingling, numbness, stroke, and many others, can also occur before a diagnosis of SLE.
Digestive Issues
Some people with lupus experience digestive problems early on. Symptoms may include nausea, vomiting, diarrhea, and abdominal pain.
Diagnosing Lupus Based on Early Symptoms
Recognizing the early signs of lupus is only the first step. Because many of these symptoms overlap other conditions, diagnosing lupus often requires a combination of blood tests, imaging, and symptom analysis. The anti-nuclear antibody (ANA) test is the most important screening test, as most lupus patients have high levels of ANA. However, a positive ANA test alone does not confirm lupus, so doctors will also consider the patient’s symptoms and medical history. Diagnosing SLE can be a complex and challenging process. There are classification criteria that help doctors diagnose SLE.
When to Seek Medical Attention
If you experience several of the early signs of lupus, such as persistent fatigue, joint pain, or mouth sores, it’s important to consult a healthcare professional. Some early symptoms, like the malar rash and discoid lupus, are more likely to point to a diagnosis of lupus.
Managing Lupus in Its Early Stages
Managing lupus in its early stages focuses on reducing inflammation, relieving symptoms, preventing flare-ups, aiming for remission and trying to keep patients off of steroids (or use the lowest doses possible). Fortunately, new SLE treatment guidelines and safer and more effective ways to use steroids have emerged.
In addition to medication, lifestyle changes like maintaining a healthy diet, regular exercise, and stress management can improve overall well-being. I make it easy to practice these measures in my “Lupus Secrets.” Make sure to print them out, highlight the things you are not doing and work on incorporating them all into your life. I guarantee your lupus will do much better compared to not doing them.
What to do after a lupus diagnosis? Living with Lupus
Lupus is a complicated disease, and it can be overwhelming after being diagnosed with lupus. I wrote a step-by-step article called “How to Succeed after a Lupus Diagnosis” that simplifies the process of learning about lupus and learning how to live with it. I encourage all newly diagnosed and veteran patients to read it for practical guidance.
For more in-depth information on Early Signs of Lupus: What to Look For (May 2025 Update):
Read more in The Lupus Encyclopedia, edition 2
Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia
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