For people living with autoimmune conditions like lupus, managing symptoms and triggers is the name of the game.

Because lupus is a systemic health condition, the type, severity, and location of symptoms during a flare-up vary from person to person. Symptoms can also change over time and from one flare-up to another. This makes managing lupus more challenging, especially during the early stages of the condition.

This article explains the basics of lupus symptoms, including how they can affect different parts of the body, what lupus flare-ups can look like, and the treatment and management options available.

What is lupus?

Lupus is an autoimmune condition where the immune system mistakenly attacks healthy tissues and organs in the body, causing inflammation and damage.

When working as it should, the immune system identifies, reacts to, and neutralizes potentially dangerous pathogens like bacteria, viruses, and parasites. With lupus, the immune system misidentifies healthy, working cells in tissues and organs as threats. 

When the immune system attacks healthy body cells, it causes inflammation and damage that can compound over time. Untreated, this can result in serious health conditions.

There are four types of lupus:

• Systemic lupus erythematosus (SLE): SLE, the most common type of lupus, is a systemic condition. This means it can affect the entire body. People with SLE have symptoms that impact their skin, joints, blood and blood vessels, kidneys, brain, heart, and lungs.

• Cutaneous lupus: Cutaneous lupus primarily affects the skin, causing blisters and sores when areas are exposed to direct sunlight. Reducing sun exposure can help manage symptoms.

• Drug-induced lupus: Drug-induced lupus presents similarly to SLE, but is caused by a reaction to certain medications. Symptoms often arise within three to six months of starting a new medication and stop when the drug is discontinued.
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• ‍Neonatal lupus: Neonatal lupus occurs when a person with lupus becomes pregnant and their body targets the fetus, causing blood, liver, and skin issues for the baby. These are typically resolved within six months of birth. In rare cases, neonatal lupus can cause life-threatening health issues for the baby that need close monitoring.

Lupus symptoms: An overview

Most people with lupus experience symptoms in episodes known as flare-ups. During these events, the immune system becomes more active, which can lead to new symptoms or a worsening of existing ones.

Symptoms of lupus can occur because of increased disease activity as well as the long-term effects of inflammation and organ damage caused by the condition.

In some cases, lupus activity can increase even when symptoms are mild or less noticeable. Changes may only be detected through medical tests or signs that certain organs are being affected.

Flares can vary in severity and may affect different parts of the body at different times, so symptoms are not always consistent.

Some of the most common early symptoms of lupus are not tied to a specific body system. These can affect your overall health and energy levels. Examples include:

• Fatigue
• Fever
• Changes in appetite
• Weight loss

Skin symptoms of lupus

Skin symptoms can occur in several types of lupus and are a defining feature of cutaneous lupus. Examples include:

• Lesions, blisters, or sores
• A butterfly rash across the face and cheeks (malar rash)
• Sensitivity to sunlight
• Temporary or permanent hair loss
• Ulcers in the nose or mouth
• Changes in finger or toe color in response to cold or stress (Raynaud’s phenomenon)

Musculoskeletal symptoms of lupus

Many people with lupus experience symptoms that impact their muscles and bones. Some of the most common musculoskeletal symptoms include:

• Joint pain, swelling, and stiffness, particularly in the hands, knees, and wrists (often called lupus arthritis)
• Muscle pain or weakness

Some people with lupus may also develop fibromyalgia, a separate condition that can cause widespread pain and fatigue.

Respiratory symptoms of lupus

During a flare-up, lupus can cause inflammation in the lungs or surrounding tissues, which can affect how the lungs function.

Examples of respiratory symptoms include:

• Pleuritis (inflammation of the lining of the lungs)
• Shortness of breath
• Pneumonia
• High blood pressure in the blood vessels of the lungs (pulmonary hypertension)

Neurological symptoms of lupus

Lupus can affect different parts of the body, including the brain and nervous system. This can lead to neurological, cognitive, and mental health symptoms.

Examples include:

• Headaches and migraines
• Brain fog, including difficulty concentrating, confusion, or memory problems
• Depression or anxiety
• Dizziness
• Seizures in more severe cases
• Psychosis in rare cases

Renal symptoms of lupus

Kidney (renal) damage can occur in some people when lupus is not properly managed.

Examples of kidney symptoms include:

• Inflammation of the kidneys (nephritis)
• Protein in the urine (proteinuria)
• Blood in the urine (hematuria)
• Swelling in the lower legs (edema)

Cardiac symptoms of lupus

In more severe cases, people with lupus can develop cardiac symptoms, including:

• Chest pain
• Difficulty breathing
• Irregular heart rhythm
• Swelling (edema)

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Having these symptoms doesn’t always mean you have lupus

If you have some of these symptoms, it does not mean you definitely have lupus. Many lupus symptoms overlap with other medical conditions, which makes diagnosis difficult.

To help this process along and ensure you can advocate for quality care, track your symptoms and share that data with your doctor.

Lupus complications

When lupus is not well controlled, ongoing inflammation can affect different organs and lead to long-term health complications. The type and severity of complications vary from person to person, depending on which parts of the body are affected.

Examples of lupus complications include:

• Kidney damage, with the potential for kidney failure in extreme cases
• Seizures
• Strokes
• Blood clots
• Pulmonary embolism
• Anemia
• Heart attacks
• Coronary artery disease
• Atherosclerosis
• Infections
• Bone tissue injury and death
• Complications with pregnancy, such as preeclampsia, premature delivery, or miscarriage

Important note: Following your treatment plan and attending regular check-ups can help reduce the risk of long-term complications from lupus.

Lupus treatment options

Lupus is usually managed with a combination of medications, lifestyle adjustments, and regular monitoring.

Medications

Because lupus is not curable, lupus medication primarily aims to reduce symptom severity and frequency. Depending on the type of lupus you have and the severity of your symptoms, you may be prescribed:

• Hydroxychloroquine
• Non-steroidal anti-inflammatory drugs (NSAIDs)
• Corticosteroids
• Immunosuppressants

Symptom journalling

Because lupus affects everyone differently, tracking symptoms, medications, flare-ups, and possible triggers helps you understand how the condition presents in your body.

Keeping a simple but detailed daily journal of potential triggers and changes in your symptoms can help you identify possible patterns and better understand how lupus affects you over time.

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See what your symptoms are telling you

Living with lupus often means paying attention to changes in symptoms, flare-ups, medications, and overall health over time. The more information you have, the easier it is to make informed decisions and advocate for better care.

Human Health is a symptom tracking app created specifically for people living with chronic health conditions. Using the app, you can track everything from fatigue, joint pain, skin changes, and flares in one place, and see how your symptoms change over time to help identify patterns.

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Frequently asked questions

What are the first warning signs of lupus?

Symptoms of lupus often come on gradually, occurring as damage and inflammation accumulate in the body. Some of the most common early signs include fatigue, unexplained fever, hair loss, joint pain, and a butterfly rash across the face and cheeks.

Is lupus serious?

Yes, lupus is a serious autoimmune condition that requires diligent monitoring and treatment. If you suspect that you or someone you love may have lupus, tracking symptoms closely and sharing that information with a doctor is a great way to advocate for quality care and support an accurate diagnosis.

Is it normal to have lupus symptoms constantly?

While it is common to cycle through flare-ups and periods of remission, some people with lupus experience symptoms more consistently. 

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. Lupus types, The U.S. Centers for Disease Control and Prevention
2. What is a lupus flare? The Lupus Foundation of America
3. Systemic lupus erythematosus (lupus), The National Institute of Arthritis and Musculoskeletal and Skin Diseases
4. Flares in systemic lupus erythematosus: diagnosis, risk factors and preventive strategies (2017)
5. Systematic lupus erythematosus (2023)
6. The Effects of Systemic Lupus–Related Cognitive Impairments on Activities of Daily Living and Life Role Participation: A Qualitative Framework Study (2023)
7. Lupus, Mayo Clinic
8. Lupus, NHS inform 
9. Lupus basics, The U.S. Centers for Disease Control and Prevention
10. What causes lupus? The Lupus Foundation of America
11. Identifying early signs of lupus, Healthline