Living with Lupus

What Causes Lupus?

Physicians do not know the exact cause of lupus. Current research suggests it develops from a combination of factors, including:

• Genetics – an inherited predisposition may increase risk.
• Environmental triggers – such as infections, ultraviolet (UV) light, extreme stress, or certain medications.
• Hormonal influences – hormones like estrogen may play a role, which may explain why lupus is more common in women.
• Immune system changes – the body’s defense system mistakenly attacks healthy tissues.

For some people, lupus appears when a genetic tendency interacts with an environmental trigger. These triggers can activate the immune response in individuals who are already at risk, leading to inflammation and symptoms.

Lupus Symptoms

Lupus can look different for everyone. Some people have symptoms that come and go, while others notice changes that build slowly over time. Common symptoms include:

• Chest pain or shortness of breath
• Fatigue
• Fever
• Hair loss
• Headaches or difficulty concentrating
• Joint pain or stiffness
• Mouth sores
• Sensitivity to sunlight
• Skin rashes, including a butterfly-shaped rash on the face/cheeks
• Swelling in the legs or around the eyes

Because these symptoms can resemble many other conditions, it may take time for physicians to pinpoint lupus as the cause. Trusting the process and sharing any new or changing symptoms with your care team can help lead to an accurate diagnosis.

Diagnostic Testing for Lupus

Diagnosing lupus is often a step-by-step process. A physician will begin with your medical history including family history and a physical exam, then use tests that reveal how your immune system and organs are functioning. Common testing includes:

• Blood tests for inflammation
• Kidney and liver function tests
• Antibody tests, such as ANA (antinuclear antibody) for screening
• EKG, Echo Cardiogram
• Skin or kidney biopsies (when needed)

These tests help your health care team understand and decide whether lupus is the cause of your symptoms.

Dr. Anand said, “No single test confirms lupus. We look at the full clinical picture — symptoms, lab findings, and the type of organ involvement — to make an accurate diagnosis. Management is then tailored to each person’s needs.”

Lupus Medications and Treatments

There is no cure for lupus yet, but many treatments can help you feel better. Your treatment plan depends on your symptoms, the organs involved and what your body needs over time. Lupus treatments often work to reduce inflammation, calm the immune system and prevent flares. Medicines may include:

• Anti-inflammatory medications to help reduce pain, swelling and stiffness. These include ibuprofen and naproxen. They can ease joint pain.
• Antimalarial drugs, such as hydroxychloroquine, to help control fatigue and rashes.
• Corticosteroids to calm inflammation during flares. These partly "turn off" the immune system. They can help with many of the problems caused by lupus.
• Immunosuppressive medications to help settle an overactive immune system and reduce inflammation which causes organ damage.
• Biologic therapies provide targeted treatment for people who do not respond fully to standard medications. Anifrolumab is a newer biologic medicine for lupus. It helps calm the immune system and reduce flares and is used with standard therapy. Belimumab and Obinutuzumab are FDA-approved treatments for lupus nephritis. They help calm the immune system and protect the kidneys when added to standard therapy.
• Medicines that protect the kidneys, heart, or other affected organs to reduce the risk of long-term damage.

Most people use a combination of medications and healthy habits to manage lupus on a daily basis. With the right plan, many people stay active and continue their usual routines.

Lupus Triggers and Flares

Living with lupus often means navigating periods when symptoms flare — times when fatigue, pain or skin changes feel stronger — followed by stretches when you feel more like yourself. These ups and downs can feel frustrating, but understanding your triggers can make a real difference. Common lupus triggers include:

• Sun exposure
• Illness or infections
• High stress
• Certain medications
• Hormonal changes
• Lack of sleep

Managing lupus flares often involves adjusting medications, protecting the skin from sunlight, getting enough rest and avoiding situations that tend to trigger symptoms. Staying connected with your health care team can help you to be prepared for and respond early when flare symptoms appear.

Complications of Lupus

While there is no cure for lupus, treatment can help reduce the risk of some of the most common and serious complications. In some cases, however, especially if left untreated, complications from lupus may occur, including:

• Kidney disease
• Blood disorders
• Heart Inflammation
• Pleuritis – Inflammation within the lung tissue
• Eye disorders
• Pregnancy Complications
• Mental Health Issues

Treatment can help prevent or reduce damage to tissues and organs, decrease the likelihood of complications, and, in some cases, cause the disease to enter remission.

What can I do on my own?

Living with lupus often means finding a rhythm that protects your health while allowing you to keep doing the things you enjoy. Many people continue work, school and family routines with a care plan that supports long-term well-being.

Over time, you may discover what helps you feel your best and what makes symptoms worse. This allows you to shape a routine that feels realistic and works best for you. Many people find these simple tips helpful for staying healthy:

• Gentle, consistent physical activity
• Healthy sleep routines
• Regular medical follow-ups
• Stress management
• Sun protection
• Support from family, friends or community groups

If you are considering trying to get pregnant, speak with your rheumatologist before you start trying. There are ways for you to lower the chances of having problems. For example, it is important that you wait until you have not had lupus symptoms for at least 6 months.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases offers additional practical tips and support for living with lupus.

When to Seek Care

Contact your physician if you develop new symptoms, notice a sudden change in your health or experience signs of a flare. Quick communication helps prevent complications and keeps your treatment plan on track.