Speaking Lupus: Common Terms Explained

If you or someone you love has been diagnosed with lupus, it can take a while to process and adjust to the ways that your life may change. Along with new habits you may need to adopt and treatments you may need to start, you’ll also need to become familiar with many of the terms and conditions associated with lupus.

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 toward understanding the condition — its symptoms, triggers, possible complications, and available medications.

Anticoagulants Anticoagulants are medications that thin the blood to prevent clots and can be used in cases where lupus causes serious blood clotting. The drugs work via various mechanisms; some (like warfarin, which is sold under the brand name Coumadin) block the production of proteins in the liver that cause blood to clot. People taking these medications should avoid smoking or drinking alcohol.

Autoimmune Disease When a person has an autoimmune disease, their immune system attacks healthy cells in the body, causing damage. A normally functioning immune system should fight off germs (bacteria, viruses, fungal infections) that may cause sickness and disease in your body.

These medications can also be used to treat very low levels of platelets, a type of circulating blood cell fragment 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.

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.

Drug-Induced Lupus Erythematosus (DIL) When lupus is triggered by a reaction to a medicine, it’s known as drug-induced lupus 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. DIL often resolves once the offending medication is stopped.

Glomerulonephritis This group of diseases damage the part of the kidney that filters the blood, called glomeruli. When the kidney is injured, it can’t remove waste and excess fluid from the body; this can eventually lead to kidney failure.

People with lupus can get acute glomerulonephritis. Early symptoms can include face puffiness in the morning, foamy urine (due to loss of excess protein in the urine), or blood in your urine. If a person experiences any of these signs, 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.

Immunosuppressive Drugs (Immune Modulators) When a person has lupus, the immune system mistakenly attacks the body’s own healthy tissues. Immunosuppressive drugs can suppress the attack through various mechanisms. These drugs may be considered to control more severe or active lupus activity that can affect major organs, including the kidneys, cardiovascular system, lungs, and brain. Because immunosuppressive drugs suppress the immune system, people taking them are at an increased risk of infection, and patients should taper and withdraw them if they’ve been in remission or had low disease activity for three to five years.

Lupus Lupus is a systemic autoimmune disease that happens when your body’s immune system attacks your own healthy tissues and organs. This can result in inflammation in many organs and body systems, including your skin, joints, kidneys, blood cells, brain, heart, and lungs.

Lupus Flare The periods when lupus symptoms get worse and a person feels ill are called flares. Flares can come and go, but common triggers include working too hard without enough rest, stress, sun exposure, exposure to fluorescent or halogen light, infection, injury, stopping lupus medication, or taking other medications.

Lupus Monitoring Different lab tests, including regular urine tests for protein and inflammatory cells, as well as blood laboratory work, 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.

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. A dermatologist treats lupus rash with topical ointments, such as steroids or immunomodulators. Typically, cutaneous lupus rashes do not leave scars, although discoid lupus, a different type of lupus rash, has a tendency to leave scars.

NSAIDs Nonsteroidal anti-inflammatory drugs (NSAIDs) are used to reduce inflammation and can help with joint pain and stiffness in people with lupus. These medications (including ibuprofen, acetaminophen, naproxen, and aspirin) 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 as many are over the counter.

Neonatal Lupus Neonatal lupus is a rare acquired autoimmune disorder in which the mother’s antibodies cross the placenta and affect the newborn baby. Some manifestations are present at birth; infants with neonatal lupus often develop a characteristic red rash or skin eruption that goes away within six months. However, people with lupus who have positive SSA/SSB antibodies are at risk for neonatal heart block and will need extra monitoring for the fetus.

Pleuritis Also called pleurisy, pleuritis describes 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, and that fluid may potentially leak out (pleural effusion). This can cause pain when breathing in and out.

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. 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 as they warm up or as the stress subsides.

Rheumatologist Rheumatologists are specialists who diagnose and treat lupus. 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 is an autoimmune disease in which the immune system attacks the glands that produce moisture in the eyes, mouth, and other parts of the body. Although it can occur on its own, it can be associated with other autoimmune diseases, including lupus. Typical symptoms include dry mouth, decreased saliva production, dry eyes, antinuclear antibodies, and 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.

The Takeaway

• Lupus is a chronic autoimmune disease. Because it impacts many parts and systems of the body, it can be difficult to understand at times.
• Knowing the terms used to describe lupus symptoms, complications, tests, and treatments can help you better manage this disease and the conditions that may accompany it.
• You will often be on medications for a long period of time. The idea is that medications let you live the life you want, so the autoimmune disease doesn't inhibit it.
• Ask your healthcare provider for more clarity on these and other lupus-related terms to get the answers you need.

Additional reporting by Andria Park Huynh.