What Is Lupus?

Systemic lupus erythematosus (lupus) is a chronic autoimmune disease that can affect any organ or tissue, including the skin, joints, heart, brain, lungs, and kidneys. In lupus, the immune system attacks healthy parts of the body. These attacks cause inflammation, leading to various symptoms, and can sometimes cause permanent damage.

Although lupus presents itself differently in each person, most people with lupus experience periods of remission when they feel well, and symptoms subside, and other periods known as flares in which previous symptoms return or new symptoms appear. These flares can range from mild to severe and are not always predictable.

Most people can manage their disease and live to their normal life expectancy with treatment.

In this article, you will learn the symptoms and causes of lupus, how lupus is diagnosed, possible complications, treatment options, ways to reduce flares, and how to live well with the disease.

What Are the First Signs of Lupus?

Early signs of lupus are often vague. In the disease's beginning stages, these symptoms are sometimes mistakenly attributed to different conditions or to simply having a busy life. Not everyone with lupus will experience all of these symptoms.

However, understanding the first signs of lupus can help you and a healthcare provider reach a diagnosis.

Joint Pain

A common first sign of lupus is pain, stiffness, and swelling in the joints. These symptoms may get worse in the morning and improve as you move around and go about your day.

Skin Rashes

Rashes on the skin are typical of lupus. Lupus can also make you sensitive to the sun. People with lupus may suddenly find that a walk outdoors causes red spots or blotches to appear on their skin.

The hallmark sign of lupus is a malar rash. This butterfly-shaped rash covers the bridge of the nose and cheeks. It can be raised or rough and last for brief periods or longer. Sometimes the sun can also trigger this type of rash.

Hair Loss

More than 50% of people with lupus will experience some sort of hair loss in the course of their disease. For some people, this serves as an early sign of the disease.

Patches of hair loss with or without scarring can be signs of lupus. Short, dry, and fragile hairs at the front of the hairline above the forehead can also occur with lupus.

Fatigue

Fatigue is a full-body symptom that up to 90% of people with lupus experience. Fatigue is not everyday tiredness. Instead, it feels completely different.

People experiencing fatigue will often find that simple activities like taking a shower or climbing a small set of stairs become impossible tasks. A walk around the block may leave you feeling as though you’ve attempted to complete a marathon.

Naps or rest don’t typically relieve fatigue. People who experience fatigue may find it to be one of the most disruptive symptoms.

Raynaud's Phenomenon

People with lupus may experience Raynaud’s syndrome. A Raynaud’s attack is usually caused by cold temperatures or stress.

Raynaud’s occurs when the blood vessels in the extremities narrow and restrict blood flow. It typically affects the fingers and toes and causes the area to turn pale or white.

The fingers may then turn numb and cold as the area loses oxygen. These areas eventually regain blood flow. In more severe cases, the lack of blood flow can cause sores to appear.

There are four types of lupus:

• Systemic lupus erythematosus is the most common type and what people refer to when they say lupus.

• Cutaneous lupus is a type of lupus that only affects the skin.

• Drug-induced lupus is a lupus-like disease caused by certain prescription medications.

• Neonatal lupus occurs when antibodies from a pregnant person with lupus affect the fetus and newborn.

Lupus Symptoms

Lupus symptoms are unpredictable and affect everyone differently. Symptoms can come and go, be mild or severe, and affect one part of the body or many. Symptoms typically change over time as well.

Lupus symptoms experienced early on can continue to appear and disappear throughout life. These include:

• Joint pain

• Fatigue

• Skin rashes such as the malar rash or rash from the sun

• Hair loss

• Raynaud’s phenomenon

Other lupus symptoms include:

• Fevers

• Sores in the nose or mouth

• Swollen legs

• Swelling around the eyes

• Pain when breathing or lying down

• Headaches

• Seizures

• Confusion

• Depression

• Dizziness

• Stomach pain

• Sensitivity to sunlight which may cause rashes, fatigue, and increased symptoms

What Causes Lupus?

The exact cause of lupus is unknown. However, studies have found that a combination of environmental, genetic, and hormonal factors play a role in its development. Lupus is not contagious.

A number of genes have been identified to be associated with lupus. People with these genes who are then exposed to certain environmental triggers may then develop lupus.

Environmental triggers such as ultraviolet B (UVB) radiation from the sun, certain infections like the Epstein-Barr virus, and toxins like cigarette smoke can alter the body's immune response when combined with genes associated with lupus.

Common environmental factors that are associated with the development of the disease and flares include:

• The sun

• Infections and other illnesses

• Exhaustion

• Emotional stress caused by events like illness, a death in the family, or divorce

• Physical stress caused by things like surgery, injury, pregnancy, or giving birth

• Sulfa drugs such as Bactrim and Septra (trimethoprim-sulfamethoxazole)

• Tetracycline drugs that make you more sun-sensitive, like Minocin (minocycline)

• Penicillin or other antibiotics

Women are more likely to develop lupus than men. Black women develop lupus more often than women of any other race. (When citing research or health authorities, we use the source's terms for gender or sex.)

Tests to Diagnose Lupus

To diagnose lupus, a healthcare provider will perform an exam, gather a history of symptoms, and order a variety of medical tests.

Blood tests for lupus look at how the immune system is working and can help determine the presence and amount of inflammation in the body. Blood tests for diagnosing lupus include:

• Complete blood count (CBC): Measures the numbers of red and white blood cells and platelets (which help the blood clot).

• Antibody tests: These look at whether your immune system is attacking healthy tissues.

• Complement tests, such as C3 and C4: These tests look for signs of inflammation associated with lupus.

Urine tests are for assessing problems with the kidneys.

A biopsy is a procedure in which a small piece of tissue is removed and examined in the lab. It can show inflammation and damage. For lupus, biopsies are typically taken from the skin, especially in areas of scarring or rashes, and the kidneys.

Complications of Lupus

Lupus affects the entire body. When lupus attacks the organs, further complications can occur. If you don't treat lupus, these complications can be deadly. These complications do not happen to everyone with lupus but can occur:

• Lupus nephritis occurs when lupus affects the kidneys. Without treatment, kidney function decreases, and the kidneys may fail. People with lupus nephritis may eventually need dialysis or a kidney transplant.

• Pericarditis is a swelling of the membrane around the heart that can cause pain in the chest and shortness of breath.

• Stroke risk is higher in people with lupus.

• Seizures can also occur with lupus.

• Pleuritis (pleurisy) is inflammation of the lining of the lungs. It can cause shortness of breath and difficulty exercising.

Lupus Treatment

Many treatment options are available to help you live well with lupus, although the condition is lifelong and has no cure. The goals are to reduce disease activity and minimize flares, prevent organ damage and further complications, and provide relief for pain and fatigue.

Nonsteroidal Anti-Inflammatory Drugs (NSAIDs)

Over-the-counter medications such as aspirin or Advil (ibuprofen) can help with pain, inflammation in the joints, and mild swelling in the muscles and joints.

Antimalarial Drugs

Plaquenil (hydroxychloroquine, HCQ) and Aralen (chloroquine phosphate) are common antimalarial medications for treating lupus. HCQ has shown it can increase survival rates, reduce flares, and prevent organ damage. Although HCQ works by modulating the immune response, it does not make you immunocompromised and more susceptible to infection.

In rare cases, retinal toxicity or deposits on the retina (the light-sensing layer at the back of the eye) can occur. For this reason, people on HCQ will have their eye health monitored on a regular basis.

Corticosteroids

Corticosteroids such as prednisone can treat flares and quickly stop any disease activity that is threatening major organs such as the kidneys.

Immunosuppressants

Immunosuppressants such as Rituxan (rituximab) or methotrexate can slow down or stop the immune response. They can treat lupus nephritis and complications with the central nervous system. They are usually for more severe cases of lupus.

Biologics

Biologics such as Benlysta (belimumab) can target the body’s immune system via injection or infusion. These medications can get expensive, but the drug companies that make them often have patient support programs to help you access them.

Other Medications

Medications for treating other diseases that are linked to lupus may also help with symptoms. These medications can include things like drugs to treat high blood pressure or osteoporosis (progressive bone thinning).

Lupus Self-Care

Though treatments work to control disease activity and reduce the amount and severity of flares, living well with lupus also requires a certain amount of personal responsibility for your own health.

Self-care for lupus is about learning to live in your new normal in a way that makes sense to you. Although self-care will look different for everyone, here are some things to think about as you discover what you need to do to take care of yourself.

Give Yourself Permission to Grieve

Adjusting to life with a chronic illness is hard. You may find yourself mourning the life you used to have, and that’s OK. Allow yourself to grieve.

Give yourself permission to be angry or sad. Just because you get an official diagnosis doesn’t mean you have to accept it right away. It will take time to adjust to your new normal.

Find Ways to Conserve Energy

Fatigue affects most people with lupus and can have a significant effect on their quality of life. You may find that you only have a certain amount of energy every day. When that energy is gone, you may have nothing left to give.

In this case, self-care may look like altering simple tasks. For example, put a chair in the shower if washing your hair worsens your fatigue. Sit down to get dressed or put on makeup. Buy cut vegetables or ask a friend to help prepare meals.

Learn to Say No

Not everyone will understand what you’re going through or how lupus affects you. Lupus is often an invisible disease.

No one can tell how fatigued you are or how much pain you are feeling. It’s OK to say no to happy hour with friends or taking on an extra task at work if you know it will worsen your symptoms. The more you tell people what you are going through, the more easily they will understand your challenges.

Find a Support Group

You don’t have to face lupus alone. There are many online and in-person support groups in which you can talk to other people who are going through the same things you are.

How to Reduce Lupus Flare-Ups

Lupus flares, or periods when symptoms worsen or reappear, can be overwhelming, especially if you’ve been in a period of remission.

A flare often feels like you’re getting sick again. You may experience similar symptoms that you experienced when you were first diagnosed, or you may experience new symptoms. Taking steps to reduce flares can help you manage the disease.

Avoid the Sun

The sun is a major trigger for lupus flares. Avoid being outdoors during peak sun hours—10 a.m. to 3 p.m. If you must be in the sun, seek shade and wear sunscreen and sun-protective clothing.

Maintain Good Health

People with lupus are more susceptible to infections and illnesses, which can trigger flares. Try to avoid others who are sick and wash your hands often.

Get regular exercise that is appropriate for you and your symptoms, practice good sleep hygiene, and find ways to reduce stress. If you smoke, stop.

Stay Compliant With Treatments

A healthcare provider creates a treatment plan with the goals of reducing flares and preventing further complications and organ damage. Even if you are feeling better, stick to your treatment plan.

People who stop taking hydroxychloroquine are at a higher risk of flares.

Living With Lupus: Outlook

Getting a diagnosis of lupus can throw you for a loop. You may wonder: Can I live a long, normal life? You may feel overwhelmed and think: How am I going to do this?

These thoughts are normal. The good news is that with improvements in treatment, people with lupus can now expect to live a long, healthy life. Though you will have moments that are overwhelming, you will eventually learn how to live with the disease.

Feeling a sense of relief when getting the diagnosis, especially if you’ve been living with symptoms for a while with no answers, is also completely normal. Putting a name to all the symptoms you’ve been experiencing can give you a sense of control.

In either case, having a treatment plan and a healthcare provider to guide you when you experience difficulties can help you get through the initial year of living with lupus and give you support as you move forward with your life.