Lupus is a chronic autoimmune disease that affects approximately 1.5 million Americans. It can impact the skin, joints, kidneys, brain, and other organs, with symptoms that range from mild to life-threatening. While there is currently no cure for lupus, advances in treatment and a proactive approach to self-management have made it possible for most people with lupus to lead full, active lives.
Understanding Lupus
Systemic lupus erythematosus (SLE) is the most common and most serious form of lupus. It is a chronic autoimmune condition in which the immune system attacks healthy tissues throughout the body. Lupus is known for its unpredictable course, with periods of active disease called flares alternating with periods of relative calm known as remission.
Lupus disproportionately affects women, particularly those of childbearing age. Nine out of ten people diagnosed with lupus are women, and the disease is two to three times more common in women of African American, Hispanic, Asian, and Native American descent. Despite its prevalence, the average time from first symptoms to diagnosis is approximately six years.
The symptoms of lupus are highly variable, which contributes to the diagnostic delay. Common symptoms include joint pain and swelling, skin rashes (including the characteristic butterfly rash across the cheeks), extreme fatigue, fever, and sensitivity to sunlight. Because these symptoms overlap with many other conditions, lupus is sometimes called the great imitator.
Recognizing Flares
A lupus flare is a period when the disease becomes more active and symptoms worsen. Flares can range from mild, involving increased fatigue and joint pain, to severe, with potential kidney inflammation or other organ involvement. Learning to recognize the early warning signs of a flare is essential for timely intervention.
Common signs that a flare may be developing include increased fatigue beyond your baseline, new or worsening joint pain, skin rashes or mouth sores, low-grade fever, and swelling in the legs or around the eyes. Some patients notice specific personal warning signs that precede their flares, making it valuable to track your symptoms over time.
When you recognize early signs of a flare, contact your rheumatologist promptly. Early intervention with medication adjustments can often prevent a mild flare from becoming severe. Keeping an emergency action plan developed with your healthcare team ensures you know exactly what steps to take when symptoms escalate.
Sun Protection and Triggers
Ultraviolet (UV) light is one of the most well-established triggers for lupus flares. Sun exposure can cause new skin rashes, worsen existing rashes, and even trigger systemic flares affecting the joints, kidneys, and other organs. Photosensitivity affects the majority of people with lupus, making sun protection a daily priority.
Effective sun protection includes wearing broad-spectrum SPF 50 or higher sunscreen every day, even on cloudy days. Reapply sunscreen every two hours when outdoors and after swimming or sweating. Wear protective clothing such as wide-brimmed hats, long sleeves, and UV-blocking sunglasses whenever possible.
Beyond UV light, other common lupus triggers include emotional stress, infections, certain medications (particularly sulfonamide antibiotics), overexertion, and insufficient sleep. Identifying your personal triggers through careful observation and symptom tracking can help you avoid or minimize exposure and reduce the frequency of flares.
Medication Management
Hydroxychloroquine (Plaquenil) is considered a cornerstone of lupus treatment and is recommended for virtually all lupus patients. This medication reduces flares, protects against organ damage, improves survival, and has a relatively favorable side effect profile. Regular eye exams are important during hydroxychloroquine use to screen for rare retinal changes.
For more active disease, your rheumatologist may prescribe immunosuppressive medications such as mycophenolate mofetil, azathioprine, or cyclophosphamide. These drugs work by reducing the overactive immune response that drives lupus. The specific medication selected depends on which organs are affected and the severity of involvement.
Biologic therapies, including belimumab and anifrolumab, represent newer treatment options that target specific pathways in the immune system. These medications have been shown to reduce flare frequency and allow patients to decrease their reliance on corticosteroids. Corticosteroids themselves are effective for rapid symptom control but carry significant long-term side effects, so your doctor will aim to use the lowest effective dose for the shortest time possible.
Diet and Nutrition
While no specific diet has been proven to cure lupus, eating a balanced, anti-inflammatory diet can help manage symptoms and support overall health. An emphasis on fruits, vegetables, whole grains, lean proteins, and healthy fats provides essential nutrients and may help reduce systemic inflammation.
Omega-3 fatty acids, found in fatty fish like salmon, mackerel, and sardines, have anti-inflammatory properties that may benefit people with lupus. Some studies suggest that omega-3 supplementation can improve disease activity scores and reduce cardiovascular risk, which is elevated in lupus patients. Discuss supplementation with your doctor before starting.
Vitamin D deficiency is extremely common in lupus patients due to sun avoidance and certain medications. Since adequate vitamin D is important for bone health and immune function, your rheumatologist will likely monitor your levels and recommend supplementation if needed. Calcium intake is also important, particularly for patients taking corticosteroids.
Exercise and Activity
Regular physical activity is beneficial for people with lupus, though it must be balanced with adequate rest. Exercise can help reduce fatigue, maintain joint flexibility, strengthen muscles, improve cardiovascular health, and boost mood. The key is finding activities that you enjoy and that do not exacerbate your symptoms.
Low-impact exercises such as walking, swimming, cycling, and yoga are generally well-tolerated by people with lupus. Start slowly and gradually increase the duration and intensity of your workouts. On days when you are experiencing a flare, it is appropriate to reduce your activity level and focus on gentle stretching rather than pushing through the pain.
Pacing is an important concept for managing energy with lupus. This means balancing periods of activity with periods of rest throughout the day, rather than doing everything at once and then becoming exhausted. Many patients find that planning their most demanding activities for times when they typically have the most energy helps them stay active without triggering flares.
Mental Health and Coping
Living with a chronic, unpredictable illness like lupus can take a significant toll on mental health. Depression and anxiety are common among lupus patients, affecting up to 40% of individuals at some point during their illness. These feelings are a normal response to the challenges of chronic disease and should not be dismissed or ignored.
Professional mental health support can be invaluable for coping with lupus. Cognitive behavioral therapy (CBT) has been shown to help patients manage the emotional aspects of chronic illness, develop effective coping strategies, and improve quality of life. If you are experiencing persistent sadness, anxiety, or difficulty coping, ask your rheumatologist for a referral.
Support groups, both in-person and online, provide a sense of community and understanding that can be difficult to find elsewhere. Connecting with others who share similar experiences helps reduce feelings of isolation and provides practical tips for daily management. The Lupus Foundation of America and local chapters offer resources and support programs throughout Los Angeles.
Building Your Care Team
Lupus is a multisystem disease that often requires a team approach to care. Your rheumatologist serves as the primary specialist coordinating your lupus treatment, but you may also benefit from the expertise of nephrologists, dermatologists, cardiologists, and other specialists depending on which organs are affected.
Your primary care physician plays an important role in managing your overall health, including preventive care, cancer screenings, and vaccinations. Because lupus and its treatments can increase the risk of infections and certain cancers, staying up to date on preventive health measures is particularly important.
At Arthritis Care of Los Angeles, we believe in a collaborative approach to lupus management. Our team works closely with specialists throughout the Los Angeles area to ensure that every aspect of your health is addressed. We also partner with you to develop a comprehensive care plan that fits your individual needs and goals.
Key Statistics
1.5 Million
Americans living with lupus
Source: Lupus Foundation of America
9 in 10
Lupus patients are women
Source: Centers for Disease Control and Prevention
6 Years
Average time from first symptoms to lupus diagnosis
Source: Lupus Foundation of America
References
- Fanouriakis A, Kostopoulou M, Alunno A, et al.. 2019 update of the EULAR recommendations for the management of systemic lupus erythematosus. Annals of the Rheumatic Diseases. 2019. PMID: 31383542
- Rees F, Doherty M, Grainge MJ, et al.. The worldwide incidence and prevalence of systemic lupus erythematosus: a systematic review of epidemiological studies. Rheumatology. 2017. PMID: 28188680
- Durcan L, O'Dwyer T, Petri M. Management strategies and future directions for systemic lupus erythematosus in adults. The Lancet. 2019. PMID: 29278753