What Is Lupus?
Lupus is a disease of the immune system. 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.
Symptoms of Lupus
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)
- Hair loss
- Sensitivity to the sun or other lights
- Mouth or nose sores
- Pale or purple fingers or toes when you’re cold or stressed (Raynaud's phenomenon)
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 these body parts:
- 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 scar. Sunlight usually irritates skin rashes. A common lupus rash called subacute cutaneous lupus erythematosus is often 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. They 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 any 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.
- Brainand 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.
- Heartand 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 the lung itself can also be affected, leading to shortness of breath.
Doctors don’t know what exactly causes lupus. But they think something – or some combinations 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 include:
Genes. There is very little evidence that particular genes directly cause lupus, but some genes seem to raise your risk for the disease. 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 (maybe). Women 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 like 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 seem to 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
- Viruses including Epstein-Barr, herpes zoster, and cytomegalovirus
- UV light
Other risk factors. There are a number of other things that could make you more likely to get lupus, like:
- Sex. 90% of people diagnosed with the disease are women.
- Age. Women 14 to 45 years old 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.
Types of Lupus
The main types of lupus are:
- Systemic lupus erythematosus (SLE). This is the most common form of lupus, where inflammation from a faulty immune system inflames a number of organs or organ systems.
- Lupus nephritis. This is inflammation of the kidneys due to SLE.
- Cutaneous lupus. Here, your faulty immune response causes skin rashes or lesions.
- Drug-induced lupus. Medication causes this type of lupus. Symptoms may stop when medication stops.
- Neonatal lupus: This form of lupus happens to infants whose mothers have SLE.
Your doctor will look for key signs of the disease based on your symptoms and blood tests.
The American College of Rheumatology has a checklist to help doctors diagnose lupus. You probably have lupus if you have at least four of the 11 criteria, either at the same time or one after the other:
- A malar rash, the "butterfly" rash on your cheeks.
- A discoid rash, red, scaly skin patches that cause scarring.
- Photosensitivity, a skin reaction or sensitivity to sunlight.
- Oral ulcers, open mouth sores.
- Arthritis, pain, inflammation, or swelling in your joints.
- Kidney problems, with either red blood cells or extra protein in your urine (proteinuria).
- Nervous system problems, seizures, or psychosis.
- Inflammation of the tissue around your lungs (pleuritis) or around your heart (pericarditis).
- 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.
- Unusual blood work, a positive test for things called antinuclear antibodies (ANA).
Antinuclear antibody test
Your body makes proteins called antibodies in response to invaders like bacteria and viruses. ANAs target certain things in the nucleus of a cell. You have a lot of them when your immune system is working against your own tissues.
An ANA test is a sensitive tool to 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.
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 with 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. Drugs that treat lupus include:
- Benlysta (belimumab). This drug is a biologic, which means it mimics natural proteins. It weakens your immune system by targeting a protein that may contribute to lupus.
- CellCept (mycophenolate mofetil). More doctors are using this medication to treat serious lupus symptoms, especially in people who have taken Cytoxan. It works on your immune system.
- Cytoxan (cyclophosphamide). This chemotherapy drug also weakens your immune system. It treats severe forms of lupus, such as those affecting your kidneys or brain.
- Imuran (azathioprine). This treats serious symptoms of lupus. It was originally used to prevent rejection after an organ transplant.
- Plaquenil (hydroxychloroquine). This medicine helps control mild lupus-related problems, such as skin and joint disease. It can also prevent symptom flares.
- Rheumatrex (methotrexate). 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.
- Rituxan (rituximab). A biologic that treats lymphoma and rheumatoid arthritis. You might take it if you have serious symptoms that don’t go away with other treatments.
- Saphnelo (anifrolumab-fnia). This newer injectable immunosuppressant is for the treatment of adult patients with moderate to severe (SLE) who are getting standard therapy.
- Steroids. 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 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.
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. The omega-3 fatty acids in fish oil also might be useful.
- Dehydroepiandrosterone (DHEA). This hormone may lessen symptom flare-ups but can also have mild side effects like 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 like depression and anxiety.
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 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.
The outlook for lupus varies, depending on which organs are involved and how bad your symptoms are. The disease often includes periods of symptoms followed by times of remission, when you don’t have symptoms.
A healthy lifestyle can help prevent attacks that send you to the hospital.
Lupus doesn’t affect how long you’ll live in most cases, especially if you follow your doctor's instructions and their treatment plans.
Living With Someone Who Has Lupus
If someone close to you has lupus, the disease will probably affect your life, as well. Here are some 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 to 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.