--- description: Learn about Lupus, a chronic autoimmune disease where the immune system attacks internal organs and joints, causing inflammation and a range of symptoms. title: Lupus image: https://autoimmune.org/wp-content/uploads/2021/08/placeholder.jpg --- [Skip to content](#content) [Donate](https://autoimmune.org/disease-information/lupus/?campaign=697841) DISEASE INFORMATION AUTOIMMUNE DISEASE SERIES Disease Information # Living with Lupus A patient-first guide to understanding lupus, recognizing symptoms, navigating diagnosis, and managing life with a complex autoimmune disease. Designed to support — not replace — conversations with your healthcare team. Overview Symptoms Diagnosis Treatment Daily Living Mental Health Symptom Tracker Resources Understanding the condition ## What is Lupus? The basics Lupus is a chronic autoimmune disease in which the immune system mistakenly attacks healthy tissues and organs. This inflammation can affect the skin, joints, kidneys, brain, heart, lungs, blood vessels, and other body systems. Symptoms vary significantly between individuals and may range from mild to severe. Key statistics Approximately 1.5 million Americans are living with lupus. About 9 in 10 adults diagnosed with lupus are women. Lupus is most commonly diagnosed between ages 15–44. Types of Lupus * Systemic Lupus Erythematosus (SLE)The most common form of lupus and can affect nearly any organ system. * Cutaneous LupusPrimarily affects the skin and may cause rashes and lesions. * Drug-Induced LupusTriggered by certain medications and often improves when the medication is stopped. * Neonatal LupusA rare condition caused by maternal antibodies crossing the placenta. * Pediatric LupusLupus diagnosed during childhood; often more aggressive than adult-onset disease. Health Equity Content Lupus disproportionately affects women of color. African American, Hispanic, Asian American, Native Hawaiian, and Pacific Islander individuals experience higher rates of lupus and often more severe disease. Risk Factors Family history, hormonal changes, infections, UV light exposure, stress, environmental pollutants, and smoking may contribute to lupus development or flares. It took me four years and six doctors to get diagnosed. Once I finally had a name for what was happening to my body, I felt a mix of relief and grief. — Community member, diagnosed age 29 Know the signs ## Recognizing your symptoms Seek emergency care immediately if you experience: Seek emergency medical care immediately for chest pain, shortness of breath, seizures, confusion, stroke-like symptoms, blood in urine, or high fever with neck stiffness. Visible Symptoms * Butterfly (malar) rashPhotosensitive rashes Hair loss (alopecia) Mouth ulcers Swollen joints Raynaud’s phenomenon Invisible Symptoms * Profound fatigueBrain fog Memory problems Depression and anxiety Heightened pain sensitivity Headaches Dry eyes Flares vs. Remission Lupus often cycles between periods of increased disease activity (flares) and periods of improvement (remission). UV/sunlight exposure Stress Infections Hormonal changes Sleep deprivation Smoking Overexertion The fatigue is the hardest part to explain. You can show someone a rash. You can’t show someone the feeling of your body being too heavy to lift off the couch. — Community member, 7 years with lupus Questions to ask your doctor ?Could my rash be related to lupus? ?How can I tell the difference between a flare and a regular illness? ?What symptoms should prompt emergency care? The path to answers ## Getting diagnosed Know this The average time from first symptoms to lupus diagnosis is often several years. Many patients report dismissal or delayed recognition before diagnosis. How diagnosis works Lupus is sometimes called “the great imitator” because its symptoms overlap with many other diseases. Diagnosis requires evaluation of symptoms, laboratory findings, imaging, and clinical history. Key blood and urine tests ANA (Antinuclear Antibody) Anti-dsDNA antibodies Anti-Smith antibodies Anti-RNP antibodies CBC (Complete Blood Count) CMP (Comprehensive Metabolic Panel) ESR and CRP inflammatory markers Complement proteins C3 and C4 Urinalysis Kidney function testing Kidney biopsy when lupus nephritis is suspected Other diagnostic tools #### Imaging and Additional Diagnostic Tools * EchocardiogramsX-rays Ultrasound MRI imaging Peripheral blood smear If you feel dismissed, it is common. You are allowed to seek another opinion until you feel heard. Questions to ask your doctor ?What does my ANA result mean? ?How do we monitor kidney involvement? ?Should I see a rheumatologist or another specialist? ?What labs should be repeated regularly? Managing the disease ## Treatment & management Important to know While there is currently no cure for lupus, many people achieve long periods of remission with appropriate treatment and monitoring. Common medications Plaquenil (hydroxychloroquine) Imuran (azathioprine) CellCept (mycophenolate) Methotrexate Benlysta (belimumab) Saphnelo (anifrolumab) Rituxan (rituximab) Gazyva (obinutuzumab) Corticosteroids Prednisone and related corticosteroids are frequently used during flares to reduce inflammation. Ibuprofen Naproxen Celecoxib Indomethacin Supportive Treatments * Blood pressure medications for kidney protectionVitamin D Calcium Omega-3 fatty acids Future Treatments CAR T-cell therapies and new biologic medications are currently under investigation through clinical trials. Your care team Rheumatologist Primary care physician Nephrologist Dermatologist Cardiologist Neurologist Pulmonologist Mental health provider Questions to ask your doctor ?Why are you recommending this medication? ?What side effects should I monitor? ?How often will labs be monitored? ?How does pregnancy affect treatment planning? Living well day to day ## Daily living with lupus Sun Protection UV exposure is a major lupus trigger. Daily sunscreen, protective clothing, and limiting prolonged sun exposure are strongly recommended. Energy Management Pacing activities, building rest into routines, and recognizing early signs of overexertion may reduce flare frequency. Nutrition Many patients benefit from anti-inflammatory diets rich in vegetables, whole grains, omega-3 fatty acids, and lean proteins. Exercise Gentle movement such as walking, yoga, swimming, and tai chi may support joint health, fatigue management, and emotional wellbeing. Pregnancy & Family Planning Pregnancy is possible with lupus but requires careful planning, medication review, and close monitoring. Workplace & Disability Rights Patients may qualify for workplace accommodations through the Americans with Disabilities Act (ADA). I had to completely redefine what a ‘good day’ looks like for me. — Community member, 12 years with lupus Caring for the whole you ## Mental health & emotional wellbeing You are not alone in this Depression, anxiety, isolation, grief, and emotional exhaustion are common among people living with lupus and should be considered part of comprehensive lupus care. Mental Health Contributors * Chronic painFatigue Medication side effects Social isolation Neuropsychiatric lupus Loss of independence Signs to watch for Persistent sadness Hopelessness Panic attacks Withdrawal from relationships Thoughts of self-harm Support Recommendations Therapy, peer support groups, mindfulness practices, and chronic illness-informed counseling can improve emotional wellbeing. Seeing a therapist who understood chronic illness changed my life as much as any medication. — Community member, diagnosed age 22 An interactive tool ## Symptom tracker Rate each symptom from 1 (mild) to 5 (severe). Bring this filled out to your appointments — it helps your provider see patterns and adjust your care. Daily symptom log Click the circles to rate each symptom from 1 (mild) to 5 (severe). Clear Copy summary Trigger log Tap any triggers that may have worsened your symptoms today, then add notes. You don't have to navigate alone ## Support & resources Organizations Autoimmune Association [autoimmune.org → ](https://autoimmune.org) Lupus Foundation of America [lupus.org → ](https://www.lupus.org) Lupus Research Alliance S.L.E. Lupus Foundation American College of Rheumatology [rheumatology.org → ](https://rheumatology.org) Crisis & mental health lines 988 Suicide & Crisis Lifeline Crisis Text Line Practical support Job Accommodation Network (JAN) Patient Advocate Foundation ClinicalTrials.gov A note on self-advocacy You are an expert on your own body. If something doesn't feel right — if you feel dismissed, unheard, or like your care isn't working — it is always okay to ask questions, seek a second opinion, or request a referral. You deserve a medical team that listens. This guide is for informational purposes only and does not constitute medical advice. 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There are three common types of lupus.\r\n\r\n \tSystemic Lupus Erythematosus (SLE) is the most serious. SLE can affect almost any organ or system in the body including blood vessels, muscles, joints, the digestive tract, lungs, kidneys, heart and central nervous system.\r\n \tDiscoid lupus causes a raised, scaly, red rash, usually on the face, scalp and neck and may cause scarring.\r\n \tDrug-induced lupus is a type of lupus which is caused by prescription medications. Symptoms are similar to those of SLE; and once the medication is stopped, the symptoms usually cease.\r\n \tNeonatal lupus is a rare disease that can affect some newborn babies of women with SLE or certain other immune system disorders. These babies may have a heart defect, skin rash, low blood count, and\/or liver problems. However, most infants of mothers with SLE are born healthy.\r\n\r\nLupus is an autoimmune disease that can affect almost every organ in the body. Symptoms of lupus can range from very mild to life-threatening. There are three main types of lupus; systemic lupus erythematosus, discoid lupus, and drug-induced lupus.[1] Symptoms may include pain or swelling in joints, muscle pain, fever, red rashes, most often on the face (also called the \"butterfly rash\"), hair loss, chest pain, sensitivity to the sun, swelling in legs or around the eyes, and feeling tired.[2] Genetics is thought to play a role in the development of lupus along with other lifestyle and environmental factors. Studies suggest that a number of different genes may be involved in determining a person\u2019s likelihood of developing the disease, which tissues and organs are affected, and the severity of disease. Lupus is more common in young women. The treatment of lupus depends on the severity of the condition and what parts of the body are affected. Treatment may include acetaminophen, ibuprofen, antimalarial drugs, anti-inflammatory steroids, immunosuppressive drugs, and other such as BLyS-specific inhibitors (Belimumab).[1]"}, {"@type":"NGO","@id":"https:\/\/autoimmune.org\/#ngo","name":"Autoimmune Association","description":"For over 30 years, the Autoimmune Association has been a pioneer in serving autoimmune patients, sponsoring research, advocating for access to healthcare, and fostering collaboration to identify and explore the common threads that link autoimmune diseases. Established through the remarkable determination of Founder Virginia T. Ladd, the Autoimmune Association has transformed into an internationally recognized leader, reaching over 60 countries worldwide. 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