- What is lupus?
- What are the symptoms of lupus?
- What is a lupus flare?
- What are the different types of lupus?
- What are the causes and risk factors for lupus?
- How is lupus diagnosed?
- What are the complications of lupus?
- How is lupus treated?
- What is the outlook for people with lupus?
- How can patients live better with lupus?
Lupus is a difficult disease to diagnose, in large part because its symptoms can vary in type and severity from one patient to the next and because the signs may also overlap with those of other conditions. There is also no single test to tell whether a person has lupus.
As such, estimates about the prevalence of lupus vary widely, with some suggesting that as many as 1.5 million people in the United States and 5 million worldwide have the condition.
If you or someone you know has lupus—or you suspect that you might—read on for information to help you understand the disease and how it’s managed. You’ll learn key facts about lupus, including what causes it and which factors can raise your risk for the condition.
You’ll also understand common lupus symptoms and which treatments can help alleviate them. While there’s no cure for lupus, you’ll find tips to help you better manage your symptoms and live well with the disease.
What is lupus?
Lupus describes a group of chronic disorders that cause inflammation in different parts of the body, including the skin, joints, and major internal organs such as the brain, heart, liver, and lungs.
Systemic lupus erythematous (SLE) is the most common type of lupus, and the terms lupus and SLE are often used interchangeably. Many of the symptoms, risk factors, and key statistics used to describe lupus refer to SLE. Other, less frequently observed types of lupus include cutaneous, drug-induced, and neonatal lupus.
What does the immune system have to do with lupus?
Lupus is classified as an autoimmune disease. Your immune system usually produces proteins in your blood called antibodies. These antibodies protect you when foreign organisms like viruses or bacteria enter your body.
In the case of lupus and other autoimmune diseases, your immune system mistakes your healthy cells and tissues for one of these disease-causing agents. As a result, your immune system creates autoantibodies (“auto” referring to “self”) instead. These autoantibodies attack, damage, and destroy your body’s healthy tissues and cells.
Roughly one-third of people with lupus live with multiple autoimmune diseases at the same time. These may include psoriasis, multiple sclerosis, or rheumatoid arthritis. Inflammation is one of the major signs that your immune system is involved with these diseases.
What are the symptoms of lupus?
Lupus symptoms and disease severity tend to differ among people. Over the course of the lifelong disease, new symptoms may appear while others may recede.
Some of the signs and symptoms people might experience include:
- Pain and stiffness in muscles and joints, with or without swelling, affects most people with lupus. Common areas for muscle pain and swelling include the neck, thighs, shoulders, and upper arms.
- Fever (often above 100 degrees Fahrenheit or 37.8 degrees Celsius) that lasts for several days, likely due to inflammation or infection
- Extreme or prolonged fatigue or weakness that can last for days or weeks and isn’t relieved by resting
- Sensitivity to light, including ultraviolet (UV) rays (both UVA and UVB) from the sun and other sources such as fluorescent lights. This exposure can cause or worsen rash, fever, fatigue, or joint pain.
- Anemia, which is a condition that occurs when your body doesn’t have enough red blood cells (RBCs) to transport oxygen throughout your body
- Chest pain when you breathe deeply due to serositis, which is when the watery membranes that line your lungs and heart (called serous membranes) become inflamed
- Dry eyes, eye inflammation, and rash on your eyelids
- Raynaud’s disease, also called Raynaud’s phenomenon, which is marked by fingers and toes that turn red, white, blue, or purple and feel numb, tingling, or painful when you’re cold or stressed. The condition may also affect the lips, nose, and chin. This is a result of constriction of the blood vessels and occurs in as many as one-third of people with lupus.
- Forgetfulness, confusion, or trouble thinking, focusing, finding the right words, and expressing thoughts. These cognitive symptoms are commonly referred to as lupus brain fog.
- Mouth ulcers (sores) that usually form on the roof of your mouth but may also form on your gums, cheeks, or lips
- Hair loss, which can result in patchy or bald spots
- Kidney problems, also known as lupus nephritis, which affects as many as half of people with lupus. Symptoms include swollen ankles, high blood pressure, decreased kidney function, and weight gain.
- Blood clots in your lungs (called pulmonary embolism) or legs (deep vein thrombosis)
What is lupus rash?
Skin issues are often a defining symptom of lupus. Rashes or sores (called lesions) can appear on any part of your body exposed to the sun. These may include a butterfly-shaped rash called a malar rash that runs across your cheeks and nose. In fact, the name lupus comes from this characteristic rash, which was seen in the Middle Ages as resembling the facial markings of a wolf. (“Lupus” means wolf in Latin.)
You may also experience large, discolored, circular or oval raised patches, known as plaques or discoid rashes.
Lupus rashes may appear differently depending on one’s skin tone. Rashes may appear dark purple or dark brown on dark skin tones and red and pink on lighter skin tones. In some cases, inexperienced HCPs may have more difficulty detecting rashes on people with darker skin tones.
How long does lupus rash last?
The duration of lupus skin issues varies by patient. For many people with lupus, rashes fade after a few days or weeks. For others, rashes and sores may form permanent scars. Certain treatments can help prevent rashes from forming and ease the appearance of sores and scars when they appear. These include immunosuppressant drugs, topical steroids, and antimalarial drugs (more below).
Early lupus symptoms
Early signs and symptoms of lupus can vary from person to person and can be subtle and nonspecific. These may include fatigue, fever, and joint pain. Because these can overlap with symptoms of other health conditions, lupus can be challenging to diagnose.
In fact, lupus might be mistaken for a condition that produces similar symptoms and affects the same organs. Examples of these conditions include rheumatoid arthritis (RA) and fibromyalgia.
Signs of lupus in people assigned female at birth
People AFAB can experience any lupus symptoms, including those that affect various parts of the body. These can lead to other health issues such as heart disease, kidney disease, and osteoporosis (weakening of bones).
Signs of lupus in people assigned male at birth
Although people AMAB can experience any symptoms of lupus, these can be more pronounced than in people AFAB.
For instance, lupus signs and symptoms that may be worse in people AMAB might include:
- Chest pain due to serositis
- Complications associated with the heart and blood vessels
- Extreme fatigue
- Inflammation in the hands, feet, or around the eyes
- Joint pain and swelling
- Low blood count
- Production of antiphospholipid antibodies (see more under “What are the complications of lupus?”)
- Renal (kidney) disease
- Unexplained fever and weight loss
Signs of lupus in children and teens
Children and teens can experience any of the signs and symptoms of lupus. Like adults, the disease can affect their skin, joints, and major internal organs.
The disease tends to be more severe and aggressive in children and teens, though. As such, people diagnosed with lupus during childhood are more likely to develop organ damage over time.
Why people experience hair loss with lupus
Hair loss and thinning can be due to lupus symptoms that affect your skin, such as scars left by lupus rash and sores on your scalp. Patchy bald spots or areas of hair thinning might also be due to certain lupus medicines such as:
- Immunosuppressives, used to reduce your body’s autoimmune response
- Steroids (also known as corticosteroids or glucocorticoids), used to reduce inflammation in the body
Does lupus cause you to gain or lose weight?
Some people with lupus gain weight, which may worsen lupus symptoms. This may occur due to:
- Diseases that often occur alongside lupus, including a condition that causes an underactive thyroid called hypothyroidism and a type of kidney disease called lupus nephritis
- Increased depression and anxiety stemming from the stress of living and coping with the disease
- Insufficient amounts of restful sleep associated with worsening lupus symptoms and stress, anxiety, and depression
- Physical inactivity due to symptoms such as fatigue and joint pain
- Side effects of certain lupus medicines, such as steroids
- Vitamin D deficiency
On the other hand, some people with lupus might lose weight without trying to do so because of digestive or gastrointestinal issues that can occur with the condition. These may include:
- Loss of appetite
- Feeling bloated or very full
- Nausea and/or vomiting
- Stomach or abdominal pain
What is a lupus flare?
Lupus symptoms may not always be present and may come and go. Periods when your symptoms are active are referred to as lupus flares. During a flare, new symptoms may develop or your previous symptoms might return and get worse.
Lupus flares can vary in severity and duration. Some people experience frequent flares while others experience them years apart.
Flares can be followed by quiet periods when you don’t have any symptoms or when you lack markers in your blood that indicate the disease is active. This is called remission. Some people experience remissions but others have lupus symptoms that may not fully go away.
Lupus flare symptoms
Common signs and symptoms of a lupus flare include:
- Edema (swelling caused by fluid buildup), especially in your legs
- Fatigue that feels worse
- Fever that persists but isn’t due to an infection
- Joint pain and swelling
- Lupus rash
- Sores or ulcers in your mouth or nose
What are the different types of lupus?
There are four main types of lupus. They include:
Systemic lupus erythematosus (SLE)
About 70 percent of people with lupus have SLE, making it the most common type. The term “systemic” means it has the potential to affect your entire body, including multiple organ systems.
The most common symptoms of SLE include:
- Joint pain and swelling
- Extreme fatigue
- Low fever
- Lupus rash (present in about 70 to 80 percent of people with SLE and it may be the first sign of the disease in about 25 percent of people)
- Swelling in the feet and around the eyes, typically due to kidney involvement
Cutaneous lupus erythematosus (CLE)
Around two-thirds of people with lupus have CLE. This lupus type may affect the skin only or it may indicate SLE.
People with CLE develop skin rashes or sores, especially in areas of the body exposed to the sun such as the face, neck, ears, arms, and legs. These symptoms tend to get worse in about 40 to 70 percent of people exposed to UV rays from the sun or artificial sources.
The three CLE subtypes include:
Subacute cutaneous lupus erythematosus (SCLE)
SCLE may be a sign of SLE, but it can also be a standalone cutaneous lupus type. It may produce discolored skin lesions that don’t typically itch or scar. These lesions may be:
- Papulosquamous lesions: These are discolored, scaly skin patches that look like pimples but can quickly spread, covering large areas of skin, typically on the shoulders, back, and chest. They are triggered by exposure to the sun.
- Annular lesions: These form flat, pink circles with a red exterior. They vary in size and may form anywhere on the body but rarely appear on the face. At times, these lesions are mistaken for those of other skin conditions such as psoriasis.
A significant proportion of cases of SCLE are caused by or worsened by the use of certain drugs, including proton pump inhibitors (like pantoprazole and omeprazole, used to treat heartburn and acid reflux) and calcium channel blockers (like nifedipine and diltiazem, used to treat high blood pressure).
Acute cutaneous lupus erythematosus (ACLE)
ACLE is often a sign of SLE. In about 30 percent of SLE patients, it produces a malar rash that spreads across the cheeks and nose. An ACLE facial rash may be mistaken for symptoms of other skin conditions such as rosacea or psoriasis.
Sometimes rashes form on other parts of the body such as the arms and the legs. Scars don’t usually develop in any of the affected areas, but the rashes can feel itchy and become discolored.
Discoid lupus erythematosus (DLE)
DLE is the most common type of chronic cutaneous lupus. In about 20 percent of cases, discoid lupus patients also have SLE. Discoid refers to the round or oval shape of the lesions that usually form on the face and scalp but also occur in other areas such as the ears, neck, and hands.
These lesions form thick, raised, scaly patches that are often pink in color and may flake or form a crust on the surface of the skin. They don’t usually hurt or itch, but they can cause skin discoloration and scarring.
DLE that forms on the scalp can cause hair in the affected area to fall out. This hair loss may be permanent if scars form over these lesions.
Discoid lesions that are present for long periods can become cancerous. It’s important to speak with a healthcare provider (HCP) if you notice any changes to the appearance of DLE sores over time.
Reactions to certain medicines can cause drug-induced lupus. It can take months to years of continuous therapy with these medicines before symptoms develop.
Drug-induced lupus symptoms often overlap with those that occur with SLE, but they rarely affect major organs. Some of these lupus-like signs and symptoms include:
- Chest pain caused by serositis
- Flu-like symptoms such as fever and fatigue
- Muscle and joint pain with swelling at times
- Various lab test abnormalities also seen with lupus
These lupus-like symptoms usually go away within six months of stopping the specific medicine involved. Drugs that are commonly known to cause these reactions include:
- Procainamide: Used to treat arrhythmias, such as atrial fibrillation and atrial flutter. It’s only available as an intravenous dose in the U.S., as oral dosage forms are no longer used
- Hydralazine: Used to treat high blood pressure
- Isoniazid: Used to treat tuberculosis
Though neonatal lupus isn’t a true form of lupus, it can cause lupus-like symptoms in infants because of antibodies they acquire while in utero from their pregnant parent who has lupus. This condition rarely occurs and having lupus doesn’t automatically mean your baby will acquire it from you.
Common neonatal lupus symptoms include liver problems, low blood cell count, and lupus rash. Most symptoms usually go away completely with no lasting effects once the antibodies make their way out of the baby’s system. This can take about six months after the baby is born.
In rare cases, the fetus can develop a congenital heart block, which causes a slow heartbeat. This is usually detected between the 18th and 24th week of pregnancy. Once born, the infant will eventually need a pacemaker to keep their heartbeat within a normal range as the heart block doesn’t resolve on its own.
What are the causes and risk factors for lupus?
But the precise mechanism for what causes lupus remains unknown. What’s currently understood is that multiple factors seem to intermingle to trigger the disease and its flares.
- Genetics and epigenetics (chromosome changes that influence gene activity)
- Environmental factors, including infections
When you have lupus, your body’s natural process of clearing out old and damaged cells may also be impaired, notes the American College of Rheumatology (ACR). This may also contribute to the response launched by your immune system that leads to lupus.
Genetics and lupus
Researchers have identified numerous genes—some are normal variations called polymorphisms while others are gene variants called mutations—often found in people with lupus. A direct cause-and-effect relationship between any of these genes and lupus hasn’t been established, however.
In many cases, genes alone aren’t enough to trigger the disease. Genetic risk usually combines with other risk factors such as environmental agents to trigger lupus and its flares.
People with no family history of the disease still get it. But biologically close family members (such as parents, siblings, or children) of people with the disease do tend to have a history of other autoimmune diseases, some of which have symptoms that overlap with lupus. Examples include autoimmune thyroid disease, Sjögren’s syndrome, and rheumatoid arthritis.
Environment and lupus
Certain environmental agents are thought to trigger lupus and its flares, especially if you already have a genetic predisposition toward the disease. How, why, and to what extent these agents influence the development, progression, or flare-ups of lupus aren’t fully known, but researchers often point to these events as likely contributors:
- An infection, such as a cold, flu, or one caused by the Epstein-Barr virus
- Silica dust exposure in industrial or agricultural settings
- UV light exposure
Other environmental agents thought to contribute to lupus include:
- Drugs that make you more sensitive to UV rays, such as sulfas, tetracyclines, and antibiotics such as penicillin, amoxicillin, ampicillin, and cloxacillin
- Heightened emotional stress, such as from the experience of divorce, death of a loved one, or serious illness
- Physical exhaustion or increased physical stress placed on the body as a result of surgery, physical harm or injury, pregnancy, or childbirth
Since lupus is much more common in people assigned female at birth (AFAB), researchers have looked into the connection between the hormones estrogen and progesterone and the development of the disease. That’s because people AFAB tend to naturally produce more of these hormones compared to people assigned male at birth (AMAB), especially during the time between their first menstrual cycle and menopause.
A lupus flare rate of 45 to 70 percent has also been tied to pregnancy, during which people experience a surge in these hormones. And in some people, lupus symptoms get worse around the time their menstrual cycle begins.
In contrast, the severity of flares tends to decrease in people who’ve reached menopause. Therapies that contain estrogen, such as birth control pills and hormone replacement therapy, may increase the risk of lupus flares, though the relationship is still being studied.
Although they’ve been linked, no causal relationship between lupus and these or other hormones has been proven. Researchers are investigating the differences in lupus development in people AFAB and people AMAB that extend beyond hormonal patterns, which may better explain why people AFAB are more prone to lupus.
How is lupus diagnosed?
Your HCP will consider many factors to help diagnose or rule out lupus. These include:
- Discussing your symptoms to see if they align with lupus symptoms
- Going over your personal and family medical history
- Performing a physical exam to look for signs of the disease such as a lupus rash, sores, and joint pain and swelling
If your HCP suspects you have lupus based on your symptoms, medical history, and physical exam, they’ll order certain tests for further confirmation. These may include:
Antinuclear antibody (ANA) panel to screen for lupus
The ANA test is one of the most common tests used to screen for lupus. It detects autoantibodies called antinuclear antibodies that attack parts of the center of cells called the nucleus.
ANA bind to cell nuclei, disrupting their ability to effectively control cellular function. This can cause cell damage and destruction and potentially trigger autoimmune diseases such as lupus.
Does a positive ANA test mean I have lupus?
Around 97 percent of people with lupus have these antinuclear antibodies in their blood. But although the presence of these autoantibodies can result in a positive ANA test, this doesn’t always mean you have the disease. In fact, many people who test ANA-positive don’t have lupus.
This is because a positive ANA doesn’t point to lupus as the specific cause of the test result. Other autoimmune diseases and infections can also trigger a positive ANA. The ANA test is an important clue in a series of clues needed to make an accurate diagnosis.
A series of antibody tests collectively referred to as an ANA panel are usually needed to help confirm a lupus diagnosis. The panel can include testing for these antibodies:
- Anti-double-stranded deoxyribonucleic acid (anti-dsDNA)
- Anti-Smith (anti-Sm)
- Anti-Ro/Sjögren's-syndrome type A (SSA)
- Anti-La/Sjögren's-syndrome type B (SSB)
- Anti-U1 ribonucleoprotein (anti-U1RNP)
- Anti-nucleoprotein (ANP)
- Anti-centromere antibody (ACA)
If your HCP suspects drug-induced lupus as a possible cause of your symptoms, they may also order a special type of ANA test called an anti-histone test. Other lab tests that may be used to reach a lupus diagnosis are those that look for antiphospholipid antibodies. These may include an anticardiolipin antibody test or an anti-Beta-2-glycoprotein-I (aβ2GPI) test.
Blood and urine tests for lupus
The results of other blood and urine tests may also help your HCP paint a more accurate diagnostic picture. These tests can help detect an active infection, increased inflammation levels, and kidney issues possibly caused by the disease.
Bear in mind that these blood and urine tests are nonspecific. This means they can detect abnormalities such as inflammation, but they can’t say which disease caused them. Therefore, they’re also used in conjunction with other screening or diagnostic tests for lupus.
These tests might include:
Complete blood count (CBC): A CBC provides a full count of the different types of blood cells. If your HCP suspects lupus, they’ll likely focus on certain CBC measures such as your red blood cell (RBC), white blood cell (WBC), lymphocyte (a type of WBC that includes B cells, T cells, and natural killer or NK cells), and platelet counts.
Erythrocyte sedimentation rate (ESR): The ESR measures how fast red blood cells (also called erythrocytes) sink to the bottom of the test tube. A high sedimentation rate indicates high levels of inflammation.
C-reactive protein (CRP): This test measures the amount of CRP in your blood. CRP is a protein produced by the liver; higher CRP levels correlate with higher inflammation levels.
Complement panel: The complement blood test measures the activity of a group of proteins found in plasma, the straw-colored liquid portion of your blood. The autoimmune response triggered by lupus can consume much of these proteins, whose role is to support immune function. Of the nine main complement proteins (labeled C1 through C9), C3 and C4 tend to be lower than normal with lupus and lupus nephritis.
Urinalysis (UA): A UA screening test helps detect substances or cellular material that may be present due to metabolic and kidney issues. A high number of RBCs and proteins in your urine may indicate kidney disease, which may be caused by lupus.
Imaging tests for lupus
Your HCP may also recommend certain imaging tests based on the results of lab tests or if your lupus symptoms affect the function of organs such as your brain, heart, and lungs.
Imaging scans might include:
- X-ray of the chest to see if your heart looks enlarged or if there is inflammation or fluid in your lungs
- Computed tomography (CT) scan of the abdomen, if you’re having abdominal pain and other digestive issues
- Magnetic resonance imaging (MRI) scan of the brain, if you’re having cognitive symptoms such as lupus brain fog
- Ultrasound (US) of your kidneys or joints, if your symptoms involve these areas
- Echocardiogram to view images of your heart and its valves, if your symptoms point to possible heart issues
Skin or kidney biopsy for lupus
Your HCP may also order a skin or kidney biopsy based on your symptoms and test results. This involves removing a small sample of tissue and viewing it under a microscope to look for inflammation and other signs of lupus.
What are the complications of lupus?
Many complications may arise from long-term symptoms of lupus or because the disease hasn’t been properly treated. These include:
Antiphospholipid syndrome (APS)
APS is an autoimmune disorder associated with lupus. When you have APS, your immune system makes autoantibodies called antiphospholipid antibodies. These autoantibodies attack phospholipids, one of the main lipid (fat) components of cell membranes.
The cell damage caused by APS can lead to blood clots and other blood flow issues that cause organ damage and raise the risk of heart attack, stroke, miscarriage, and preeclampsia (high blood pressure during pregnancy).
Atherosclerosis and lupus vasculitis
Lupus can lead to long-term inflammation and tissue damage. This can raise the risk of atherosclerosis, a conditionthat occurs when waxy, fatty deposits called plaques build up in the arteries, causing them to harden.
Lupus can also lead to vasculitis, or blood vessel inflammation in any part of the body, including the brain, gut, heart, and skin. This can lead to bruising, ulcers, sores, skin rashes, seizures, and vision loss.
Diabetes and insulin resistance
Lupus raises the risk of type 2 diabetes and insulin resistance, which is when your body becomes less sensitive to the effects of the hormone insulin, making it hard for your muscles and fat to absorb and use blood glucose and for the liver to keep storing it. If you have lupus and diabetes, you also have a higher risk of kidney failure and neuropathy (nerve damage).
Lupus can lead to inflammation in several areas of the heart, including the:
- Inner lining of the heart’s chambers and valves, a condition called endocarditis
- Heart muscle, a condition called myocarditis
- Sac surrounding the heart, a condition called pericarditis
These can affect how well the heart functions and lead to symptoms such as chest pain and palpitations, shortness of breath, fever, and fainting.
Lupus nephritis and kidney failure
Lupus nephritis occurs when the kidneys become inflamed, which makes it hard for the organs to filter and eliminate waste products and toxins from the body. Up to 60 percent of people with lupus develop lupus nephritis.
The condition can lead to severe and permanent damage to the kidneys. Kidney function gradually decreases over time, which can eventually lead to kidney failure.
Lupus can affect the lungs, blood vessels within the lungs, the diaphragm, and the membrane that lines the lungs. These can lead to:
Interstitial lung disease: Scars develop in the lungs because of chronic inflammation, which can cause a chronic dry cough, chest pain, and breathing issues during physical activity.
Pleuritis: The lining that covers the lungs (called the pleura) becomes inflamed, which can cause severe, sharp, stabbing chest pain called pleurisy. Fluids can also build up in the space between the lungs and chest wall, in a condition called pleural effusion.
Pneumonitis: Lung tissue becomes inflamed, causing symptoms such as chest pain, cough, fever, and shortness of breath.
Pulmonary embolus: A blood clot blocks the arteries leading to the lungs, causing chest pain, shortness of breath, and decreased oxygen flow to your lungs.
Pulmonary hypertension: This is a form of high blood pressure that occurs in the lung arteries and the right side of the heart. It can cause symptoms such as chest pressure or pain, heart palpitations, shortness of breath, and dizziness or fainting.
Neuropsychiatric lupus (NPSLE)
Lupus may also affect the nervous system, causing symptoms that affect your brain and nerves. These may include:
- Cognitive issues such as changes in behavior and lupus brain fog
- Anxiety and mood disorders, such as depression
- Dry eyes, inflammatory eye conditions such as scleritis, and optic nerve damage
In addition to a higher risk of miscarriage and preeclampsia, you may also be more prone to gestational diabetes and preterm birth during pregnancy.
Spinal cord inflammation
Lupus contributes to a condition that causes spinal cord inflammation called transverse myelitis. This can cause sudden pain that starts in your lower back and shoots down your arms or legs or around your abdomen or chest. It can also cause bowel or bladder control issues, as well as weakness, numbness, tingling, or a cold or burning sensation in your arms or legs.
How is lupus treated?
Thinking about what to do after getting diagnosed with lupus can feel daunting. The first step is to learn as much as you can about your condition and then work with your HCP to tailor an effective treatment plan. While there’s no cure for lupus, various treatments and lifestyle strategies can help ease your symptoms and prevent flare-ups.
Your HCP will recommend a treatment plan based on your age, sex, symptoms, lifestyle, other health conditions you may have, as well as your treatment preferences. You can work with your HCP to determine the right combination of treatments for you.
Lupus treatment goals include:
- Easing symptoms, including inflammation
- Preventing and controlling flares
- Suppressing your body’s autoimmune response
- Minimizing complications
Medicines currently used to treat or prevent lupus symptoms include:
Anticoagulants (blood thinners): If you test positive for antiphospholipid antibodies or have had blood clots, your HCP may recommend you take one of these blood-thinning medicines. These drugs can’t treat an existing clot, but they can help prevent further clots from forming. Examples include heparin, warfarin, and low-dose aspirin.
Antimalarials: Certain medicines, such as hydroxychloroquine or chloroquine, used to treat the mosquito-borne infection malaria, can also alleviate lupus symptoms such as fatigue, joint pain, lung inflammation, and skin rashes. They may also help prevent lupus flares and reduce the amount of other lupus medicines you may need to take.
Biologics/monoclonal antibodies: These work by finding, binding to, and blocking the action of a specific protein in the body involved in the autoimmune response. Examples include the B-lymphocyte stimulator (BLyS)-specific inhibitor belimumab and the type I interferon receptor antagonist anifrolumab-fnia.
Corticosteroids (also called steroids or glucocorticoids): These drugs mimic the anti-inflammatory effects of a hormone called cortisol produced by the body. They work by dampening your immune response (such as by suppressing overactive white blood cells), which helps prevent and quickly suppress pain and inflammation caused by lupus. Examples include prednisone, prednisolone, and methylprednisolone. They may be taken orally, by injection, or in the form of creams or gels.
Immunosuppressives: These agents help restrain your body’s autoimmune response by blocking the production of certain immune cells. They may be an option to treat severe lupus symptoms, especially if your brain, heart, kidneys, or lungs have been affected. Examples include methotrexate, mycophenolate mofetil, azathioprine, and cyclophosphamide. Voclosporin is used to treat lupus nephritis only.
Nonsteroidal anti-inflammatory drugs (NSAIDs): Over the counter (OTC) and prescription NSAIDs help reduce pain, fever, and inflammation. Examples include aspirin, celecoxib, ibuprofen, and naproxen.
Repository corticotropin (Acthar Gel): This drug contains a highly purified version of adrenocorticotropic hormone (ACTH). It may help ease lupus symptoms such as inflammation and help prevent lupus flares by helping the body produce more of its own natural steroid hormones (such as cortisol).
Complementary and alternative medicine (CAM) for lupus
Due to the cost of lupus medicines and the risk of side effects, some people look to approaches that don’t involve these medicines to help manage their lupus symptoms. Examples of these complementary and alternative medicine (CAM) approaches include:
- Chiropractic care
- Dietary supplements, including vitamin, mineral, and herbal supplements
- Massage therapy
- Traditional Chinese Medicine (TCM), which includes practices such as tai chi and acupuncture
Although some research has shown that CAM approaches may help with certain lupus symptoms such as fatigue, pain, and swelling, there’s no research to date that shows that any of these methods can cure the disease or prevent complications such as organ damage.
If you’re looking to integrate CAM approaches into your treatment plan, it’s best to have a thorough discussion about the potential benefits and harms with your HCP. Some CAMs, including various herbal and dietary supplements, may interact with your lupus medicines and make your symptoms worse.
What is the outlook for people with lupus?
The outlook for people living with lupus continues to improve due to advances in treatment and a greater understanding of how the disease progresses. Many are living longer, fuller lives as a result.
In most developed countries, the 10-year survival rate for systemic lupus erythematous (SLE) is greater than 95 percent on average, especially if the disease is well-controlled starting in its early phases. The 15-year survival rate hovers around 85 to 95 percent, according to a 2022 review of studies published in the Journal of Allergy and Clinical Immunology.
Keep in mind that these survival rates don’t reflect the average number of years people with lupus are expected to live after being diagnosed with the disease. A 10- or 15-year survival rate, therefore, doesn’t mean that a given percentage of people will only live for 10 or 15 more years from the time they were first diagnosed. These survival rates reflect the number of years participants with lupus were followed in various studies. At the end of the study period, researchers were able to conclude that a percentage of the participants were still alive during the given timeframe.
How can patients live better with lupus?
Lupus is a complex disease that poses physical, mental, and emotional challenges. And because not all symptoms can be seen or felt by others, some people in your life may not understand what you’re going through.
It’s important to listen to your body and heed what it’s telling you. Despite a diagnosis of lupus, you can find meaningful ways to stay involved with your relationships, work or school functions, and other activities you care about.
How to manage everyday life with lupus
The following strategies can help you better cope with lupus, ease the stressors of living with a chronic condition, and maintain a more balanced life.
Educate yourself—and others. Lupus isn’t contagious, but it is a chronic autoimmune disease that often has unpredictable symptoms that can flare up and come and go. The more you understand what to expect from the condition, the better equipped you may be to weather the ups and downs—and to ask those around you for the help you need, when you need it.
Adjust your plans and activities as needed. Being honest with your friends and family about the symptoms you’re experiencing may help them better understand why you may not be able to join certain activities. Add breaks to your daily schedule and reassign tasks to other household members as needed, making sure to communicate why this needs to happen (and thanking them for their help, too).
Take a break from lupus when possible. Although the disease can sometimes feel all-consuming, know that it doesn’t have to define who you are or whatever short- or long-term goals you wish to achieve. Allow yourself mental and emotional breaks from lupus by taking time to connect with yourself and the activities that bring you joy and fulfillment.
Nourish your relationships. Forge and maintain a strong network of trusted friends, family members, and loved ones you can turn to for emotional and physical support. Nourish these relationships by enjoying activities together and offering support in return.
Seek professional support. To support your mental well-being, you may choose to seek help from a licensed mental health provider. They can offer strategies for coping with issues such as stress, depression, and anxiety. Couples or family therapy can help you and your partner or other loved ones adjust better to your diagnosis and manage the stressors that impact you all. An online or in-person support group can also help you engage with and learn from others living with lupus.
How to talk with your employer about your lupus diagnosis
Although the thought of telling your employer about your lupus diagnosis can feel intimidating, you can take steps to have a helpful and effective conversation.
Talk with your HCP about your job. Start by talking with your HCP about your job function and tasks, making sure to explain what aspects of your job can be challenging to accomplish because of lupus.
Request a job accommodation letter from your HCP. Ask your HCP to write a letter outlining your lupus diagnosis and what job accommodations you might need. Accommodations refer to changes that help you perform your job—things like flexible or modified hours, working remotely, assistive equipment, or limitations on strenuous activities.
Consult with your human resources (HR) or occupational health departments. Determine who you need to talk to and who at your company needs to know about your lupus diagnosis. Your employer’s human resources (HR) or occupational health departments can often help you navigate this process. This information may also be available in your employee handbook or documents that outline company policies, some of which might be available under the HR section of your company intranet website.
List talking points pertaining to your job accommodations. Consider what you would like to say to your employer beforehand and make notes that you can reference during your conversation. Be sure to include constructive messaging that emphasizes how specific accommodations can benefit your job performance—and by extension, your employer.
Schedule your meeting and share your job accommodation letter with your employer. Schedule a meeting with your employer and an HR representative to discuss your lupus diagnosis and accommodations. Bring the letter from your HCP and give it to your employer. This documentation is important to protect your rights as outlined by the Americans with Disabilities Act (ADA), which requires that U.S.-based employers offer reasonable accommodations to help an employee perform their job functions.
How to manage school with lupus
Lupus doesn’t have to stop you from achieving your dreams. These tips can help you prepare for the demands of school while still caring for your health needs.
- Keep to a manageable school schedule and class load, building in enough time to rest, relax, and get quality sleep.
- Inform your school about your lupus diagnosis, making sure to register with your school’s disability or accessibility department. If you don’t know how to reach this department, call your school’s student health clinic for this information.
- Consider talking with your academic advisor and instructors about accommodations you might need to help you complete your courses successfully. That might involve receiving extra time to complete tests, essays, online discussion posts, and other class projects.
- Consider talking with classmates you trust and interact with on a regular basis about your lupus diagnosis, what lupus symptoms they might observe, and how they can help.
- Talk with your school’s financial aid office about grants, scholarships, and other types of financial aid to help with school and living costs. Some of these may be geared toward people with disabilities.
What can I do to prevent lupus flare-ups?
Lifestyle strategies are an integral part of a comprehensive treatment plan. They can help ease lupus symptoms and prevent flares. Therefore, your HCP will likely recommend you:
Rest often and as needed. Take rest breaks throughout your day to help counter fatigue. This includes getting enough quality sleep each night and taking a 20- to 30-minute nap at least 8 hours before your usual bedtime, if needed. In general, adults need at least 7 hours of sleep each night. Teens need 8 to 10 hours of sleep and school-age kids need 9 to 12 hours.
Nourish your body with healthful foods and drinks. Focus on whole foods such as fresh fruits and vegetables, whole grains (such as brown rice, quinoa, and oats), lean proteins (including lean meats, poultry, seafood, and beans), and healthy fats (olive oil, avocado, nuts). Foods to avoid or limit when you have lupus include processed foods, alcohol, saturated fats, sodium (salt), and added sugars. Certain foods including garlic and alfalfa sprouts may also trigger lupus flares.
Exercise regularly. Getting physically active helps keep your mind and body healthy. It supports your physical health, helps you think more clearly, and eases stress. Low-impact workouts such as walking, swimming, yoga, and tai chi can help you build strength while minimizing the impact on your joints. Try to find activities you enjoy that help you stay fit and healthy without making your lupus symptoms worse.
Quit smoking tobacco or never start. Using tobacco products can trigger lupus flares and hurt your overall health.
Manage stress in healthy ways. Find healthy ways to relax and ease your stress. Try taking a relaxing bath, listening to soothing music, or engaging in a hobby that brings you peace and enjoyment. Stress-management techniques such as deep breathing and meditation might also help.
Protect yourself from UV light. Wear sunscreen, a wide-brimmed hat, and clothing that covers much of your skin when you spend any amount of time outdoors. Don’t use tanning beds and stay away from fluorescent and halogen lighting, as these are also UV light sources.