What Is Lupus? A Nurse Explains the Types, Causes and Outlook

Lupus is a long-term autoimmune disease. That means your immune system, which normally protects you from germs, attacks your own healthy tissues by mistake. This causes inflammation that can affect your skin, joints, kidneys, heart, lungs, blood and brain.

If you are asking “what is lupus” because you or someone you love was just diagnosed, take a breath. Lupus is serious, but treatment has improved a lot. Many people with lupus live full, active lives. Here is what you need to know, in plain language.

What Is Lupus and How Does It Work?

Your immune system is your body’s defense team. It makes antibodies, which are proteins that find and fight germs like viruses and bacteria.

In lupus, the immune system gets confused. It makes antibodies that target your own cells. These are called autoantibodies. They cause swelling, pain and, over time, possible damage in the parts of the body they attack.

Lupus does not follow one set pattern. According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), symptoms can be mild or severe, can come and go, and can change over time. Lupus usually moves between:

  • Flares: times when the disease is active and symptoms get worse
  • Remission: times when symptoms calm down or go away

The Four Types of Lupus

When most people say “lupus,” they mean systemic lupus erythematosus, or SLE. But there are four main types.

Systemic lupus erythematosus (SLE)

SLE is the most common type and the most serious. “Systemic” means it can affect the whole body. The CDC notes it can range from mild to life-threatening and can involve the joints, skin, brain, lungs, kidneys and blood vessels.

Cutaneous lupus

Cutaneous lupus affects only the skin. It causes rashes or sores, usually on skin that gets sun. One kind, called discoid lupus, causes round, scaly patches that can leave scars. Some people with cutaneous lupus also have SLE, and some do not.

Drug-induced lupus

Some medicines can cause lupus-like symptoms in certain people. MedlinePlus lists hydralazine (a blood pressure medicine), procainamide (a heart rhythm medicine), isoniazid (a tuberculosis medicine), minocycline and some TNF blocker medicines among the common causes. Symptoms usually show up after at least 3 to 6 months on the drug.

The good news is that drug-induced lupus usually goes away after the medicine is stopped. Your doctor makes that decision with you. Never stop a medicine on your own.

Neonatal lupus

Neonatal lupus is rare. It can happen when a baby is exposed to certain antibodies from the mother during pregnancy. It can cause skin, liver or blood problems that usually go away by about 6 months of age. The most serious problem is a heart rhythm issue called congenital heart block, which needs close care and sometimes a pacemaker.

Who Gets Lupus?

Anyone can get lupus, including men and children. But some people are at higher risk. Based on NIAMS, Mayo Clinic and Cleveland Clinic, risk is higher if you are:

  • A woman: Lupus is much more common in women than men.
  • Between ages 15 and 45: This is when lupus most often starts, though it can begin at any age. The American College of Rheumatology says about 20% of people with SLE first develop it as children or teens.
  • Black, Hispanic, Asian or Native American: Lupus is more common in these groups than in white people. The American College of Rheumatology adds that it tends to be more severe in African American and Asian people.
  • Related to someone with lupus or another autoimmune disease: Family history raises risk. Still, the CDC points out that most people with lupus do not have a relative with the disease.

What Causes Lupus?

No one knows the exact cause. Experts believe it is a mix of genes and things in your environment.

You may be born with genes that make lupus more likely. Then something may set it off. NIAMS lists possible triggers such as:

  • Sunlight
  • Viral infections
  • Certain medicines
  • Smoking

Hormones may also play a role, which may help explain why lupus is so much more common in women.

It is important to know this: you did not cause your lupus. It is not your fault, and nothing you did or did not do brought it on.

Common Signs of Lupus

Lupus can look very different from one person to the next. Common symptoms include:

  • Extreme tiredness (fatigue)
  • Joint pain, stiffness and swelling, often worse in the morning
  • Fevers without a clear cause
  • A rash across the cheeks and nose, often called a butterfly rash
  • Rashes that appear or get worse in the sun
  • Hair loss
  • Painless sores in the mouth or nose
  • Fingers or toes that turn white or blue in the cold (Raynaud’s phenomenon)
  • Chest pain when you take a deep breath
  • Swelling in the legs or around the eyes

Because these signs look like many other illnesses, it can take time to get a diagnosis.

How Lupus Is Diagnosed

There is no single test for lupus. A doctor, often a rheumatologist (a specialist in joint and autoimmune diseases), puts together several pieces:

  • Your symptoms, including ones that came and went in the past
  • A physical exam
  • Blood tests, such as a complete blood count and tests for inflammation
  • An ANA (antinuclear antibody) test
  • Urine tests to check for protein or blood, which can be a sign of kidney involvement
  • Sometimes a skin or kidney biopsy, where a small tissue sample is checked

Almost everyone with lupus has a positive ANA test. But Mayo Clinic notes that most people with a positive ANA do not have lupus. A positive result is a clue, not an answer.

Tip: Keep a simple list of your symptoms and when they happen. Photos of rashes or swollen joints can help too, since symptoms may not show up on the day of your visit.

How Lupus Can Affect the Body

When lupus is active, inflammation can reach organs. Mayo Clinic lists possible complications, including:

  • Kidneys: Lupus nephritis is kidney inflammation from lupus. Cleveland Clinic reports that about half of adults with lupus develop it. Untreated, it can lead to kidney failure.
  • Heart and lungs: Inflammation of the lining around the heart or lungs can cause chest pain and trouble breathing. Lupus also raises the risk of heart disease.
  • Blood: Lupus can cause anemia and a higher risk of blood clots.
  • Brain and nerves: Headaches, memory trouble, seizures or stroke can happen.

This is why regular checkups and lab work matter, even when you feel well. Kidney problems in particular may not cause symptoms early on.

Is There a Cure for Lupus?

There is no cure for lupus yet. But it can be treated, and treatment works best when it starts early and stays steady.

Treatment aims to calm the immune system, ease symptoms, prevent flares and protect your organs. The American College of Rheumatology recommends hydroxychloroquine for nearly everyone with SLE unless there is a reason they cannot take it. Other options include steroids, immune-calming medicines and newer biologic medicines. Your care team will choose a plan based on which parts of your body are affected.

What Is the Outlook for People With Lupus?

The outlook for lupus is much better than it once was. The American College of Rheumatology says most people with lupus can live normal lives, and people with lupus are living longer thanks to better treatment.

Things that help the most:

  • Taking your medicines as prescribed
  • Seeing your rheumatologist regularly, even when you feel fine
  • Protecting your skin from the sun
  • Not smoking
  • Staying active with regular exercise your doctor approves
  • Learning your own early warning signs of a flare

Most women with lupus can have healthy pregnancies when the disease is well controlled. If you are thinking about pregnancy, plan ahead with your doctor, because some lupus medicines are not safe in pregnancy.

When to Get Emergency Care

Call 911 or go to the emergency room if you have:

  • Trouble breathing
  • Chest pain, or other signs of a heart attack
  • A seizure
  • Sudden weakness or numbness on one side, a drooping face, trouble speaking or sudden vision loss (signs of a stroke)
  • Severe pain

Frequently Asked Questions

Is lupus the same as rheumatoid arthritis?

No. Both are autoimmune diseases that can cause joint pain, but lupus can affect many more parts of the body, such as the skin, kidneys and blood. A rheumatologist can tell the difference with an exam and tests.

Can men get lupus?

Yes. Lupus is much more common in women, but men and children can get it too. Anyone with signs of lupus should be checked.

Does a positive ANA test mean I have lupus?

Not by itself. Many healthy people have a positive ANA. Your doctor looks at your symptoms, exam and other tests before making a diagnosis.

The Bottom Line

Lupus is a long-term autoimmune disease where the immune system attacks your own body. The main types are systemic lupus (SLE), cutaneous lupus, drug-induced lupus and neonatal lupus. It is most common in women ages 15 to 45, and there is no cure yet. With steady treatment and regular checkups, most people with lupus can live full lives.

Sources

About the author: Anna Curran, RN, BSN, PHN, is a registered nurse, public health nurse and nurse educator who has taught health topics in plain language since 2012. More about Anna.

This article is for general education only and is not medical advice. Talk with your own doctor or licensed provider before you start, stop or change any treatment. In an emergency, call 911. In crisis, call or text 988. See our medical disclaimer.