Medical lingo can be intimidating at first, but it doesn’t have to be a source of stress. This glossary can be a first step in helping you understand your condition — the symptoms, the triggers, the possible complications, and available medications — in order to optimize your health while living with lupus. Anticoagulants In cases where lupus causes serious blood clotting, anticoagulants can be used. These medications thin the blood to prevent clots. The drugs work via various mechanisms; some (like warfarin) block the production of proteins in the liver that cause blood to clot. People taking these medications should avoid smoking or drinking alcohol. Antinuclear antibodies (ANA) The hallmark sign of lupus is the presence of antibodies to antigens in the nucleus of the cell. These antibodies are produced by the immune system. They’re thought to be associated with the way autoimmune immune disease works and how the body attacks its own cells. Testing for the presence of these antibodies is a way that doctors test for lupus because almost everyone who has lupus has a strongly positive test. However, a positive ANA test isn’t enough to diagnose lupus on its own; about 10 percent of healthy people and many people with other autoimmune diseases may test positive for ANA, though usually less strongly positive. More important in diagnosing lupus are the symptoms you have that are consistent with the condition. Autoimmune disease A healthy, normally functioning immune system fights off germs (bacteria, viruses, fungal infections) that may cause sickness and disease in your body. When a person has an autoimmune disease, their immune system attacks healthy cells in the body causing damage, and they have a high level of inflammation. Experts don’t know what causes autoimmune diseases, but they can run in families, and women, especially African American, Hispanic American, and Native American women, have a higher risk for some autoimmune diseases. RELATED: What Causes Lupus? Common Risk Factors and More B-cell biologic medications These drugs are primarily approved for cancer but are sometimes prescribed for people with lupus. The only B-cell biologic currently approved to treat lupus is Benlysta (belimumab). These biologic agents reduce the activity of B cells, a type of white blood cell that can create antibodies that attack healthy tissue. These medications can also be used to treat very low levels of platelets, a type of circulating blood cell that helps with clotting. Lupus nephritis, an inflammation of the kidneys, and vasculitis, an inflammation of the blood vessels associated with lupus can also be treated with B cell therapy. Butterfly rash (malar rash) This rash appears on the cheeks and the bridge of the nose in the shape of butterfly, hence its name. It’s estimated that about 60 percent of people with lupus have a butterfly rash at some point. RELATED: Signs and Symptoms of Lupus Chronic disease A disease is considered chronic if it lasts one year or more and requires ongoing medical care or limits activities of daily living. Lupus is a chronic disease, as are diseases such as cancer, diabetes, and heart disease. Corticosteroids Also called steroids, these drugs are used in many diseases — asthma, rheumatoid arthritis, lupus — to help decrease inflammation. These medications can reduce the swelling, warmth, pain, and tenderness that can come with lupus inflammation. They can also reduce the activity of the immune system, which can help prevent damage to tissues in the body. Though steroids work really well and quickly, long-term use can have many lasting side effects, including acne, development of a round or moon-shaped face, weight gain due to increased appetite, irritability, an increased susceptibility to infections, weak bones (osteoporosis), diabetes, and hypertension. Drug-induced lupus erythematosus When lupus is triggered by a reaction to a medicine, it’s known as drug-induced erythematosus. The disease is similar to systemic lupus erythematosus (also called SLE or simply “lupus”). There are several different medications that can possibly trigger the disease; it tends to occur after taking the drug in question for at least three to six months. The most beneficial tests and treatments for drug-induced lupus erythematosus work to stop the offending drug. Additional treatments manage the symptoms of drug-induced SLE until the immune system calms down. Most of the time, drug-induced lupus erythematosus is not as severe as SLE and the symptoms often go away after stopping the medicine that caused the disease. Glomerulonephritis This word describes a group of diseases that damage the part of the kidney that filters the blood, called glomeruli. When the kidney is injured, it cannot get rid of waste and extra fluid in the body; this can eventually result in kidney failure. People with lupus can get acute glomerulonephritis. Early symptoms can include face puffiness in the morning, foamy urine (due to excess protein), or blood in your urine. If a person experiences any of these symptoms, they should seek medical care immediately. Immune system The immune system protects the body from outside “invaders” that can make us sick, such as bacteria, viruses, fungi, and toxins. The immune system is made up of different organs, cells, and proteins that work together. There are two parts to the immune system: the innate immune system and the adaptive immune system. The innate immune system is inherited and immediately fights invaders that enter the body. The adaptive, or acquired, immune system works with the innate immune system to produce antibodies to protect the body from a specific invader. Immunosuppressive drugs (Immune modulators) When a person has lupus, the immune system mistakenly attacks the body’s own healthy tissues. Immunosuppressive drugs can be used to suppress the attack through various mechanisms. Some interfere with the synthesis of DNA, thereby preventing the cells of the immune system from dividing. When those cells can’t divide correctly, they eventually die. These drugs are used to control more serious lupus activity that can affect major organs including the kidneys, the cardiovascular system, the lungs, and brain. Because immunosuppressive drugs inhibit the immune system, people taking them are an increased risk of infection. RELATED: Treatment for Lupus: Medication, Complementary Therapies, and More Lupus Lupus is a systemic autoimmune disease that happens because your body’s immune system attacks your own healthy tissues and organs. This can result in inflammation in many different body systems and organs, including your skin, joints, kidneys, blood cells, brain, heart, and lungs. Symptoms of lupus can include muscle and joint pain, fever, rashes, chest pain, hair loss, sun or light sensitivity, extreme fatigue, kidney problems, mouth sores, memory problems, blood clotting, anemia, and eye disease. Lupus flare The periods when lupus symptoms get worse and a person feels ill are called flares. Flares can come and go, but there are common triggers that can include working too hard without enough rest, stress, sun exposure or exposure to fluorescent or halogen light, infection, injury, stopping lupus medication, or taking other types of medicine. Often signs and symptoms appear before a flare, such as feeling tired, rash, aches and pains, severe headache, dizziness, and fever. Lupus monitoring Different lab tests are used to detect any change or condition in the body that can occur when a person has lupus. These periodic screenings can help doctors determine the severity of lupus, how the treatment is working, and any medication-related side effects. Typical tests used to monitor lupus include:
Complete blood count (CBC), which provides information about red blood cells, white blood cells, and platelet countsErythrocyte sedimentation rate (ESR) and C-reactive protein (CRP), which indicate inflammationComplete metabolic panel (CMP), which looks at liver, kidney, endocrine, and other functionsUrine with microscopy, which gauges kidney health
Lupus rash Lupus rash (cutaneous lupus erythematosus) is a skin disease that often develops in people with lupus. The rash or sores most often appear on sun-exposed parts of the body, including the face, ears, neck, arms, and legs. Approximately two-thirds of people with lupus will develop cutaneous lupus. A dermatologist treats lupus rash with different kinds of topical ointments, such as steroids or immunomodulators. Myocarditis This is inflammation of the myocardium or heart muscle and occurs in less than 10 percent of people with lupus. Myocarditis may weaken the heart’s ability to pump blood to the rest of the body so it must be closely monitored and treated. NSAIDs Non-steroidal anti-inflammatory drugs (NSAIDs) are used to reduce inflammation and can help with joint pain and stiffness in people with lupus. These medications can irritate the stomach and may also cause serious gastrointestinal problems, such as a bleeding ulcer. Experts recommend being careful about taking too much of any NSAID; overuse may reduce blood flow to the kidneys and may interfere with their ability to remove waste from the body. People should talk to their doctors first before taking NSAIDs. Neonatal lupus Neonatal lupus is a rare acquired autoimmune disorder in which the mother’s antibodies cross the placenta and affect the newborn baby. There are some manifestations that are present at birth; infants with neonatal lupus often develop a characteristic red rash or skin eruption that goes away within six months. The most serious potential complication is a heart condition known as congenital heart block. In this case, the mother’s antibodies affect the baby’s heart. This is associated with certain antibodies and a pregnant woman’s ob-gyn will monitor the baby’s heartbeat early. There are some cases that may require a pacemaker for the baby. RELATED: What You Need to Know About Pediatric Lupus Pericarditis Lupus can affect the cardiovascular system. Pericarditis is the most common heart problem associated with active lupus and occurs in about 1 in 4 people. This condition develops when the pericardium, the thin membrane surrounding your heart, becomes inflamed and irritated. Pleuritis Also called pleurisy, this happens when the pleura, a membrane that covers the exterior of the lungs and the interior of the chest cavity, becomes inflamed. This can cause fluid to build up between the lungs and the chest wall; if the fluid leaks out it’s called pleural effusion, which can be very painful. Raynaud’s phenomenon Also known as Raynaud’s disease (when it’s the primary condition) or Raynaud’s syndrome, this disease causes some parts of your body, usually the fingers and toes, to feel numb and cold in response to cold temperatures or stress. When you are cold, your body normally shrinks your blood vessels (vasoconstriction). With Raynaud’s, your body overconstricts the blood vessels in your fingers, toes, nose, ears, and lips. The fingers or toes also change color, often appearing white or blue. Stinging pain or a prickly feeling can occur when they begin to warm up or the stress subsides. Rheumatologist The specialists that diagnose and treat lupus are called rheumatologists. These experts are internal medicine doctors or pediatricians who have been trained in the diagnosis and treatment of musculoskeletal disease and systemic autoimmune conditions. Sjogren’s Syndrome This disease is relatively common, though often under-diagnosed. Although it can occur by itself, it can be associated with other autoimmune diseases, including lupus. Typical symptoms include dry mouth, poor saliva production, dry eyes, the presence of antinuclear antibodies, and the presence of a positive rheumatoid factor (also known as an immune system protein). Systemic lupus erythematosus (SLE) This is the most common form of lupus; when people use the blanket term “lupus” they are usually referring to SLE. It’s called systemic lupus because it can affect so many systems in the body, including the kidneys, joints, skin, and cardiovascular and nervous systems.