Lupus

Lupus is an autoimmune disease that causes inflammation throughout your body. If you have lupus, your immune system damages your body instead of protecting it.

Lupus can damage your:

• Skin
• Blood
• Joints
• Kidneys
• Brain
• Heart
• Lungs

Visit a healthcare provider if you notice new pain, rashes or changes to your skin, hair or eyes.

Types of lupus

Healthcare providers sometimes call lupus systemic lupus erythematosus (SLE). It’s the most common type of lupus. It means you have lupus throughout your body. Other types include:

• Cutaneous lupus erythematous: Lupus only affects your skin.
• Drug-induced lupus: This is when a medication causes lupus symptoms as a side effect. It’s usually temporary. It might go away after you stop taking the medication that caused it.
• Neonatal lupus: Babies are sometimes born with lupus. Babies whose biological parents have lupus might have an increased risk of it. But they aren’t guaranteed to have it.

What are lupus symptoms?

Where you have symptoms depends on which organs or systems lupus affects. Everyone experiences a different combination and severity of symptoms.

The most common symptoms include:

• Pain, including in your joints, muscles or chest (especially when you’re taking a deep breath)
• Headaches
• Rashes, especially across your face, which healthcare providers sometimes call a butterfly rash
• Fever
• Hair loss
• Mouth sores
• Fatigue
• Shortness of breath
• Swollen glands
• Swelling in your arms, legs or on your face
• Confusion
• Blood clots

Lupus symptoms usually come and go in waves called flare-ups. During a flare-up, the symptoms can be severe enough to affect your daily routine. In between flares, you might have periods with mild or no symptoms. This is called being in remission.

Symptoms usually develop slowly. You might notice one or two signs of lupus at first. Then, you might experience more or different symptoms later on.

Lupus complications

Lupus sometimes leads to other health conditions. The damage to your organs and tissue can add up over time and lead to new or different issues. Some lupus complications can include:

• Light sensitivity
• Dry eye
• Depression or other mental health conditions
• Seizures
• Anemia
• Raynaud’s syndrome
• Osteoporosis
• Heart disease
• Kidney disease

Lupus causes

Experts don’t know for sure what causes lupus. Certain factors about your health or where you live may trigger lupus, including:

• Genetic factors: Having certain genetic variations may make you more likely to have lupus.
• Hormones: Reactions to certain hormones in your body (especially estrogen) may make you more likely to develop lupus.
• Environmental factors: These are aspects about where you live, work or spend time. For example, how much pollution or sunlight you’re exposed to might increase your lupus risk.
• Your health history: Smoking, experiencing lots of stress and having certain other health conditions may trigger lupus. Lots of people with other autoimmune diseases also develop lupus.

Risk factors

Anyone can develop lupus. You have a higher risk if one or both of your biological parents have it. Your lupus risk will also be higher if you’re:

• Female, especially between the ages of 15 and 44
• Black
• Hispanic
• Asian
• Native American, Alaska Native or First Nations
• Pacific Islander

How is lupus diagnosed?

A healthcare provider will diagnose lupus with a physical exam and some tests. They’ll ask about the symptoms you’re experiencing. Tell your provider when you first noticed symptoms or changes in your body. Your provider will ask about your medical history, including conditions you have now and how you’re managing them.

Lupus can be tricky to diagnose because it can affect so many parts of your body. And it causes lots of different symptoms. Even small changes or issues that seem unusual can be key. Don’t be afraid to tell your provider about anything you’ve felt or sensed. You know your body better than anyone.

Tests that are used

There’s not one test that can confirm a lupus diagnosis. Diagnosing it is usually part of a differential diagnosis. This means your provider will probably use a few tests to determine the cause of your symptoms. They’ll rule out other, more common conditions before diagnosing lupus. You might need:

• Blood tests: These can show how well your immune system is working. They can also help your provider check for infections or other issues, like anemia or low blood cell counts.
• Urinalysis: This helps check your pee for signs of infections or other health conditions.
• An antinuclear antibody (ANA) test: This looks for antibodies. Antibodies are protein markers that show a history of your body fighting off infections. People who have lupus usually have certain antibodies that show their immune system has been overly active.
• A biopsy of your skin or kidney tissue: A biopsy can show if your immune system has damaged them.

Lupus treatments

Your healthcare provider will suggest treatments that manage the symptoms. The goal is minimizing damage to your organs and how much lupus affects your day-to-day life. You’ll probably need a combination of medications. They can reduce how often you experience flare-ups and lessen how severe symptoms are when you have one. Some of the most common SLE medications include:

• Hydroxychloroquine: This is a prescription medication that treats malaria. It can relieve lupus symptoms and slow down how quickly they get worse.
• NSAIDs: These over-the-counter pain relievers also reduce inflammation. Your provider will tell you which type of NSAID will work best for you, and how often you should take it. Don’t take NSAIDs for more than 10 days in a row without talking to your provider.
• Corticosteroids: These are prescription anti-inflammatory medications. Prednisone is a common corticosteroid providers use to manage lupus. Your provider might prescribe pills you take by mouth. They may inject medicine directly into one of your joints.
• Immunosuppressants: These medications hold back your immune system and stop it from being as active. They can help prevent tissue damage and inflammation.

You might need other medications or treatments to manage specific lupus symptoms or other health conditions it’s causing. For example, you may need treatment for anemia, high blood pressure or osteoporosis if lupus causes those issues.

How can I prevent lupus flare-ups?

You might be able to prevent and reduce lupus flare-ups by avoiding activities that trigger symptoms, including:

• Avoiding sun exposure: Spending too much time in the sun can trigger lupus symptoms in some people. Try to avoid going outside when the sun is brightest, between 10 a.m. and 4 p.m. Wear long sleeves, a hat or sun-protective clothing. Use a sunscreen that’s at least SPF 50.
• Staying active: Joint pain can make it hard or painful to move. But moving and gently using your joints can be the best way to relieve symptoms like pain and stiffness. Walking, biking, swimming, yoga and tai chi are all great ways to move your body without putting too much stress on your joints. Ask your provider which types of activities are safest for you.
• Getting enough sleep and protecting your mental health: Living with lupus can be frustrating. Getting the right amount of sleep (seven to nine hours for adults) and reducing your stress can help prevent flare-ups for some people. A mental health professional can help you develop healthy coping mechanisms.

When should I see my healthcare provider?

Visit a healthcare provider as soon as you notice any new or changing symptoms. Even small shifts in what you’re feeling and experiencing can be important.

Talk to your provider if it feels like your treatments aren’t working as well as they used to. Also, tell your provider if you’re having flare-ups more often, or if they’re causing more severe symptoms. Your provider can help you adjust your treatments as needed.

Go to the emergency room or call 911 (or your local emergency services number) if you’re experiencing any of the following symptoms:

• You can’t breathe
• You’re in severe pain
• You think you’re experiencing heart attack symptoms

What can I expect if I have lupus?

Lupus is a lifelong (chronic) condition. You should expect to manage it for the rest of your life.

It can be unpredictable. And the way it impacts you can change over time. You’ll need to visit your healthcare provider regularly so they can track changes in your body.

You’ll probably work with a team of providers as you learn to live with lupus. Your primary care provider will suggest specialists who can help with specific issues or symptoms. You’ll probably need to visit a rheumatologist. This is a healthcare provider who specializes in diagnosing and treating autoimmune diseases. Which specialists you need to visit depends on the symptoms you have and how they affect your body.

There’s currently no cure for lupus. Your healthcare provider will help you find a combination of treatments to manage the symptoms. You may be able to enter remission once you find treatments that work for you. Even if you have long periods of time with no symptoms or flare-ups, there’s always a chance lupus will come back. Your care team will help you set goals and expectations based on your unique circumstances.