What Is Lupus?
Lupus is a long-term disease of the immune system that causes pain and inflammation. When people talk about “lupus,” they’re often referring to the most common type, systemic lupus erythematosus (SLE).
Your immune system protects your body from infection. But when you have lupus, your immune system attacks your own tissues. This leads to tissue damage and illness.
Most people with lupus have a mild form with periodic flare-ups. During these periods, symptoms may worsen for a bit, then get better or even go away for a time.
Lupus Symptoms
The symptoms of lupus vary from one person to another. Some people have just a few symptoms, while others have many.
Lupus can affect any part of your body. Common symptoms include:
- Achy joints (arthralgia)
- Fever higher than 100 F
- Swollen joints (arthritis)
- Constant or severe fatigue
- Skin rash
- Ankle swelling
- Pain in your chest when breathing deeply (pleurisy)
- A butterfly-shaped rash across your cheeks and nose (malar rash), which may appear dark purple or dark brown on dark skin but red or pink on light skin
- Hair loss
- Sensitivity to the sun or other lights
- Seizures
- Mouth or nose sores
- Pale or purple fingers or toes when you’re cold or stressed (Raynaud's phenomenon)
Early lupus symptoms
The early stages of lupus typically don’t exhibit a consistent pattern of symptoms. However, initial signs may include fever, weakness, weight loss, or fatigue. Another early symptom may be pain in your joints.
Lupus rash
A rash on your face that looks like a butterfly’s wings is often considered the most telltale sign of lupus. The rash often will appear or worsen after you’ve been in the sun. Even exposure to fluorescent lights can trigger your rash.
Lupus Causes
Doctors don’t know what causes lupus. But they think something or a combination of things triggers your immune system to attack your body. That's why most treatments are aimed at weakening your immune system. The things that lead to this faulty immune response aren’t clear, but scientists think they may include:
Genes. There is very little evidence that particular genes directly cause lupus, but some genes seem to raise your risk for lupus. For example, people of certain ethnicities — Hispanic, Native American, African, Asian, Pacific Islander — are more likely to get lupus, possibly due to shared genes.
Still, it seems clear that genes aren’t enough to cause the disease. Even in identical twins (which have identical genes) where one twin has lupus, the other twin is only about 30% more likely than normal to develop the disease.
Hormones. Women, or those assigned female at birth, get lupus far more often than men. In addition, lupus symptoms seem to increase before monthly periods and during pregnancy when estrogen is higher.
But medications with estrogen, such as birth control pills and hormone replacement therapy, don’t seem to raise the risk of lupus. Scientists are trying to figure out what, if any, connection there is between hormones and lupus and why women get the disease more often.
Environment. It can be hard to figure out exactly which things around you act as causes of lupus. But there are some factors that scientists have strong suspicions about. These include:
- Cigarette smoke
- Silica, a common mineral from the earth's crust found in sand, stone, concrete, and mortar
- Mercury
- Viruses including Epstein-Barr, herpes zoster, and cytomegalovirus
- Ultraviolet (UV) light
- Stress
Medications. Some prescription medications such as hydralazine and procainamide can cause lupus. The symptoms usually get better after you stop taking the drug.
Other risk factors. Several other things could make you more likely to get lupus, such as:
- Sex: 90% of people diagnosed with the disease are women.
- Age: People aged 15 to 45 years are most often affected.
- Family history: Lupus sometimes affects more than one member of a family. But only about 10% of people with lupus have a close relative with the disease.
- Race: Lupus is more common among women of African American, Asian, Hispanic, and Native American descent. African American and Hispanic women tend to have more serious cases of lupus.
Types of Lupus
Systemic lupus erythematosus (SLE)
This is the most common form of lupus, where a faulty immune system inflames several organs or organ systems. About 70% of people with lupus have this form of the disease.
Lupus nephritis
This is inflammation of the kidneys due to SLE. If the damage is severe, you could need dialysis or a kidney transplant.
Cutaneous lupus
With this, your faulty immune response causes skin rashes or lesions. There are three types of cutaneous lupus:
- The chronic, long-term type can cause permanent scarring.
- The subacute type displays red, circular sores or scaly patches with defined edges. This rash can appear on the arms, chest, or back.
- The acute type can result in a rash if you already have other lupus symptoms. This type can appear quickly, doesn’t last long, and usually doesn't leave scars. However, it can cause long-term discoloration of your skin.
Discoid lupus
Discoid lupus is a type of chronic cutaneous lupus and is the most common. Its rash looks like a disc and most often appears on your scalp or face. Sores from the rash are often red and scaly and can lead to scarring, discoloration of your skin, or hair loss. If you have these symptoms, a dermatologist or rheumatologist may be able to help you.
If you have dark skin, you're more likely to get it than white people. Black women are particularly at risk, with a four times higher chance of developing discoid lupus than white women.
Drug-induced lupus
Medication causes this type of lupus, which is a form of subacute cutaneous lupus. Types of drugs that may cause it include proton pump inhibitors (often prescribed for acid reflux) and calcium channel blockers (prescribed for a variety of ailments, such as high blood pressure). Symptoms may stop when you stop taking the medication.
Neonatal lupus
This form of lupus happens to infants whose mothers have SLE.
Lupus Diagnosis
Your doctor will look for key signs of the disease based on your symptoms and lab tests.
They'll do a physical exam to check for symptoms such as:
- A malar rash, the “butterfly” rash on your cheeks
- A discoid rash with red, scaly skin patches that cause scarring
- Photosensitivity, a skin reaction or sensitivity to sunlight
- Oral ulcers, open mouth sores
Other symptoms could include:
- Arthritis, pain, inflammation, or swelling in your joints
- Nervous system problems, seizures, or psychosis
- Inflammation of the tissue around your lungs (pleuritis) or around your heart (pericarditis)
Blood and urine tests can help your doctor see if you have other conditions that could be caused by lupus, including:
- Kidney problems, with either red blood cells or extra protein in your urine (proteinuria)
- A blood disorder, either a low red blood cell count (anemia), a low white blood cell count (leukopenia), fewer lymphocytes (lymphopenia), or fewer platelets (thrombocytopenia)
- An immunologic disorder, including certain cells or proteins, or a false-positive test for syphilis (antiphospholipid antibodies). Blood tests can check for other unusual antibodies, such as anti-SM or anti-DNA antibodies.
- Unusual blood work, such as a positive test for antinuclear antibodies (ANA)
Antinuclear antibody test
Your body makes proteins called antibodies in response to invaders such as bacteria and viruses. Antinuclear antibodies target certain things in the nucleus of a cell. You have a lot of them when your immune system is working against your tissues.
An ANA test can spot autoimmune diseases including lupus. It measures how many times your blood must be diluted to get a sample that doesn’t have any antibodies.
Does a positive ANA test mean I have lupus?
Not necessarily. The ANA test is positive in most people who have lupus, but it also may be positive in many people who have another autoimmune disease or who don’t have any diseases. A positive ANA test alone isn’t enough for your doctor to diagnose lupus. You would also need at least three of the other criteria.
Lupus Treatment
Your lupus treatment will depend on several things, including your age, your overall health, your medical history, which part of your body is affected, and how severe your case is.
Because lupus can change over time, it’s crucial to have regular visits to a doctor, such as a specialist called a rheumatologist.
Some people with mild cases don’t need treatment. Those who have more serious symptoms such as kidney problems may need strong medications. Types of medications that treat lupus include:
Biologics
- Belimumab (Benlysta) and other biologics mimic natural proteins. This drug, which is injected in your veins, weakens your immune system by targeting a protein that may lead to lupus.
- Rituximab (Rituxan or Truxima) is another biologic that you can try if other drugs haven't helped you.
Immunosuppressants
These types of drugs are designed to suppress your immune system if you have a serious form of lupus. They include:
- Anifrolumab-fnia (Saphnelo). This newer injectable immunosuppressant is for the treatment of adult patients with moderate to severe SLE who are getting standard therapy.
- Azathioprine (Imuran). This treats serious symptoms of lupus. It was originally used to prevent rejection after an organ transplant.
- Mycophenolate mofetil (CellCept). More doctors are using this medication to treat serious lupus symptoms, especially in people who have taken Cytoxan.
Corticosteroids
You can put steroid creams directly on rashes. They’re usually safe and effective, especially for mild rashes. Low doses of steroid creams or pills (such as prednisone) can ease mild or moderate signs of lupus. You can also take steroids in higher doses if lupus is affecting your internal organs. But high doses also are most likely to have side effects.
Nonsteroidal anti-inflammatory drugs (NSAIDs)
Over-the-counter NSAIDs, such as ibuprofen and naproxen, may help with pain and fever from lupus.
Antimalarial drugs
- Hydroxychloroquine (Plaquenil). This medicine helps control mild lupus-related problems, such as skin and joint disease. It can also prevent symptom flares. Because of potential side effects, you should have regular eye checkups if taking antimalarial drugs for lupus.
Chemotherapy drugs
- Cyclophosphamide (Cytoxan). This chemotherapy drug also weakens your immune system. It treats severe forms of lupus, such as those affecting your kidneys or brain.
- Methotrexate (Rheumatrex). Another chemotherapy drug that weakens your immune system. More doctors are using it for skin disease, arthritis, and other conditions that don’t get better with medications such as hydroxychloroquine or low doses of the steroid prednisone.
Lupus alternative treatments
Some people use complementary or alternative treatments to ease lupus symptoms. But there’s no proof that any of them treat or cure the disease. Some herbal supplements can even interact with prescription drugs or make your symptoms worse. Talk to your doctor before starting any treatments.
Research has found some benefits with certain treatments, including:
Vitamins and supplements. Vitamins C and D and antioxidants may help with symptoms and boost your overall health.
Fish oil. This contains omega-3 fatty acids, which may help those with lupus. Early studies have found some promising benefits of the supplement.
Dehydroepiandrosterone (DHEA). This hormone may lessen symptom flare-ups but can also have mild side effects such as acne or hair growth.
Acupuncture. Small studies show that acupuncture can lessen pain and fatigue.
Mind-body therapy. Meditation and cognitive behavioral therapy could ease pain as well as mental health issues such as depression and anxiety.
Lupus Cure
There is no cure yet for lupus. But progress is being made in the treatment of the disease, including:
- Research has found that people treated with anifrolumab see improved renal (kidney) function.
- Cognition may improve with the addition of azathioprine to your lupus treatment.
- Dapirolizumab pegol has improved immune responses after being taken for 2 weeks.
- Ianalumab has shown a reduction in flare-ups.
- Voclosporin has shown improved renal response in Black people with lupus nephritis, with improvement lasting over 3 years.
The American College of Rheumatology offers various ways you can be involved in advocacy for those with lupus. You can stay aware of treatment updates on its website, rheumatology.org.
The Lupus Foundation of America provides several updates in the Advancing Research section of its website, lupus.org. You can also subscribe to regular emails from the organization on lupus updates and available resources.
Lupus Complications
Many people who have active lupus feel ill in general. They have fever, weight loss, and fatigue. When their immune system attacks a certain organ or part of the body, they can also have more specific problems. Lupus can affect your:
Skin. Skin problems are common with lupus. So are hair loss and mouth sores. If you have a type called discoid lupus, you get large, red, circular rashes that may cause scars. Sunlight usually irritates skin rashes. A common lupus rash called subacute cutaneous lupus erythematosus often gets worse after you go out in the sun. You might have it on your arms, legs, and torso. A rare but serious form of lupus rash called a bullous lupus rash causes large blisters.
Joints. Arthritis is very common in people who have lupus. It can cause pain, with or without swelling. Stiffness and pain may be worse in the morning. Arthritis may be a problem for only a few days or weeks, or it may be permanent. It’s usually not severe.
Kidneys. Up to half of people who have lupus get kidney problems, which can be dangerous. These problems are more likely when you also have other lupus symptoms, such as fatigue, arthritis, rash, fever, and weight loss. But they can also happen when you don’t have other symptoms.
Blood. People with lupus may have dangerously low numbers of red blood cells, white blood cells, or platelets (particles that help your blood clot). Changes in blood counts may cause fatigue (with a low red cell count, also known as anemia), serious infections (with a low white cell count), or easy bruising or bleeding (with a low platelet count). But many people don’t have symptoms from low blood counts. It’s important to have regular blood tests to spot these problems. Blood clots are more common in people with lupus. They often happen in your legs (called deep venous thrombosis or DVT), in your lungs (called pulmonary embolism or PE), and sometimes in your brain (stroke). These clots may be tied to how your body makes things called antiphospholipid (APL) antibodies. These are unusual proteins that may make your blood more likely to clot.
Brain and spinal cord. Rarely, lupus can cause problems in your brain. You might have confusion, depression, or seizures. When it affects your spinal cord (transverse myelitis), lupus can cause numbness and weakness.
Heart and lungs. Heart and lung problems are often caused by inflammation of the tissue covering your heart (pericardium) and lungs (pleura). When these become inflamed, you may have chest pain, an uneven heartbeat, and fluid buildup around your lungs (pleuritis or pleurisy) and heart (pericarditis). Your heart valves and lungs can also be affected, leading to shortness of breath.
When to See Your Doctor
If you develop new lupus symptoms or existing symptoms worsen, you should see your doctor.
Go to an emergency room if you have trouble breathing, are in terrible pain, or think you may be having a heart attack. Some heart attack symptoms include:
- Chest pain, tightness, pressure, or a squeezing feeling
- Brief or sharp pain in your arm, neck, or back (especially in women). Pain can also spread to your shoulder, jaw, and even upper belly
- Cold sweat
- Nausea
- Sudden dizziness or feeling lightheaded
- Heartburn
- Indigestion
- Fatigue
If your medication isn’t helping as much as it used to, check with your doctor to see if they should update or change the drugs you take.
Living With Lupus
Some daily changes can ease symptoms and improve your quality of life:
Exercise. Low-impact exercises such as walking, swimming, and biking can help you keep muscle and lower your chances of osteoporosis (thinning of the bones). It might also boost your mood.
Get enough rest. Pace yourself. Follow periods of activity with periods of rest.
Eat well. Get a healthy, well-balanced diet.
Avoid alcohol. Alcohol can interact with your medications to cause stomach or intestinal problems, including ulcers.
Don't smoke. Smoking can hurt blood flow and make lupus symptoms worse. Tobacco smoke also harms your heart, lungs, and stomach.
Play it safe in the sun. Limit your time in sunlight, especially between 10 a.m. and 2 p.m. Wear sunglasses, a hat, and sunscreen with an SPF of at least 55 when you’re outdoors.
Treat fevers. Take care of high temperatures right away. A fever may be a sign of an infection or a lupus flare-up.
Be a partner in your care. Work toward an honest and open relationship with your doctor. Be patient. It often takes time to find the medication and dosage that works best for you. Follow your doctor's treatment plan, and don't be afraid to ask questions.
Get to know your disease. Keep track of your lupus symptoms, which parts of your body are affected, and any situations or activities that seem to trigger your symptoms.
Ask for help. Don’t be afraid to ask for help. Consider joining a support group. It often helps to talk to other people who have been through similar experiences.
Lupus diet
While there is no “one-diet-fits-all" for lupus, eating nutritious foods can help you deal with symptoms of the disease. For example, eat a variety of healthy fats and proteins, whole grains, and plenty of fruits and vegetables. Be aware that, if you have lupus nephritis, you may need to be on a special diet to keep your kidneys healthy.
It's OK to eat a vegan or vegetarian diet if you have lupus, but you’ll want to take a vitamin B12 supplement. According to some experts, you should avoid food or supplements that contain alfalfa.
Because lupus increases your risk for heart disease and osteoporosis (a bone disease), be sure to get adequate calcium and omega-3 fatty acids in your diet.
Talk to your doctor about any questions related to your nutrition, and they can even refer you to a dietitian for more guidance.
Living With Someone Who Has Lupus
If someone close to you has lupus, the disease will probably affect your life, too. Here are tips for living with someone who has lupus:
- Learn about lupus and its treatment. Understanding the illness can help you know what to expect, and help you provide better support and understanding.
- Don't push. Give your loved one enough space to deal with the illness and regain some control over their life.
- When you can, go to the doctor with them. This is a good way to offer support and to hear what the doctor says. Sometimes, the other person feels overwhelmed and may forget details.
- Encourage the person to take care of themselves and to follow the doctor's treatment plan, but do it gently. Be patient, and don't nag.
- Be open. Talk about your fears and concerns, and ask the person about their fears and needs.
Takeaways
Lupus is an autoimmune disease that causes pain and inflammation throughout your body. It typically includes periods of worsening symptoms (flares) followed by remission, when you won’t have symptoms. While there is no cure for lupus, the outlook varies depending on which organs are affected and how bad your symptoms are. Research continues to develop new treatments and medications to improve the quality of life for those with lupus. A healthy lifestyle and diet may also help prevent flare-ups.
Lupus FAQs
Is lupus cancer?
No, lupus is a disease of the immune system.
Is lupus deadly?
The majority of people who have lupus will not die from it. However, if organs such as the kidneys are affected by lupus and treatment plans aren’t closely followed, the related kidney disease could result in death.
What is the life expectancy of a person with lupus?
About 80%-90% of people with lupus will live out their expected lifespan.
What are three triggers of lupus?
Some lupus triggers might be:
- Working too much and not getting enough rest
- Being out in the sun too much
- Developing an infection
How does a person with lupus feel?
Many people who have active lupus feel ill in general. They have fever, weight loss, and fatigue. If your immune system attacks a certain organ or part of your body, you can also have more specific problems.
What happens if lupus goes untreated?
Lupus can affect many of your organs, so if you choose not to treat your symptoms, there’s a higher risk of worse symptoms, damaged organs, and increased flare-ups. If organ damage is severe, that can be life-threatening.
