Information for Patients
What is lupus?
Lupus is an autoimmune disease. This means that your immune system attacks healthy cells and tissues by mistake. This can damage many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain.
There are several kinds of lupus
- Systemic lupus erythematosus (SLE) is the most common type. It can be mild or severe, and can affect many parts of the body.
- Discoid lupus causes a red rash that doesn't go away
- Subacute cutaneous lupus causes sores after being out in the sun
- Drug-induced lupus is caused by certain medicines. It usually goes away when you stop taking the medicine.
- Neonatal lupus, which is rare, affects newborns. It is probably caused by certain antibodies from the mother.
What causes lupus?
The cause of lupus is not known.
Who is at risk for lupus?
Anyone can get lupus, but women are most at risk. Lupus is two to three times more common in African American women than in Caucasian women. It's also more common in Hispanic, Asian, and Native American women. African American and Hispanic women are more likely to have severe forms of lupus.
What are the symptoms of lupus?
Lupus can have many symptoms, and they differ from person to person. Some of the more common ones are
- Pain or swelling in joints
- Muscle pain
- Fever with no known cause
- Red rashes, most often on the face (also called the "butterfly rash")
- Chest pain when taking a deep breath
- Hair loss
- Pale or purple fingers or toes
- Sensitivity to the sun
- Swelling in legs or around eyes
- Mouth ulcers
- Swollen glands
- Feeling very tired
Symptoms may come and go. When you are having symptoms, it is called a flare. Flares can range from mild to severe. New symptoms may appear at any time.
How is lupus diagnosed?
There is no single test to diagnose lupus, and it's often mistaken for other diseases. So it may take months or years for a doctor to diagnose it. Your doctor may use many tools to make a diagnosis:
- Medical history
- Complete exam
- Blood tests
- Skin biopsy (looking at skin samples under a microscope)
- Kidney biopsy (looking at tissue from your kidney under a microscope)
What are the treatments for lupus?
There is no cure for lupus, but medicines and lifestyle changes can help control it.
People with lupus often need to see different doctors. You will have a primary care doctor and a rheumatologist (a doctor who specializes in the diseases of joints and muscles). Which other specialists you see depends on how lupus affects your body. For example, if lupus damages your heart or blood vessels, you would see a cardiologist.
Your primary care doctor should coordinate care between your different health care providers and treat other problems as they come up. Your doctor will develop a treatment plan to fit your needs. You and your doctor should review the plan often to be sure it is working. You should report new symptoms to your doctor right away so that your treatment plan can be changed if needed.
The goals of the treatment plan are to
- Prevent flares
- Treat flares when they occur
- Reduce organ damage and other problems
Treatments may include drugs to
- Reduce swelling and pain
- Prevent or reduce flares
- Help the immune system
- Reduce or prevent damage to joints
- Balance the hormones
Besides taking medicines for lupus, you may need to take medicines for problems that are related to lupus such as high cholesterol, high blood pressure, or infection.
Alternative treatments are those that are not part of standard treatment. At this time, no research shows that alternative medicine can treat lupus. Some alternative or complementary approaches may help you cope or reduce some of the stress associated with living with a chronic illness. You should talk to your doctor before trying any alternative treatments.
How can I cope with lupus?
It is important to take an active role in your treatment. It helps to learn more about lupus - being able to spot the warning signs of a flare can help you prevent the flare or make the symptoms less severe.
It is also important to find ways to cope with the stress of having lupus. Exercising and finding ways to relax may make it easier for you to cope. A good support system can also help.
NIH: National Institute of Arthritis and Musculoskeletal and Skin Diseases
Systemic lupus erythematosus Systemic lupus erythematosus (SLE) is a chronic disease that causes inflammation in connective tissues, such as cartilage and the lining of blood vessels, which provide strength and flexibility to structures throughout the body. The signs and symptoms of SLE vary among affected individuals, and can involve many organs and systems, including the skin, joints, kidneys, lungs, central nervous system, and blood-forming (hematopoietic) system. SLE is one of a large group of conditions called autoimmune disorders that occur when the immune system attacks the body's own tissues and organs.SLE may first appear as extreme tiredness (fatigue), a vague feeling of discomfort or illness (malaise), fever, loss of appetite, and weight loss. Most affected individuals also have joint pain, typically affecting the same joints on both sides of the body, and muscle pain and weakness. Skin problems are common in SLE. A characteristic feature is a flat red rash across the cheeks and bridge of the nose, called a "butterfly rash" because of its shape. The rash, which generally does not hurt or itch, often appears or becomes more pronounced when exposed to sunlight. Other skin problems that may occur in SLE include calcium deposits under the skin (calcinosis), damaged blood vessels (vasculitis) in the skin, and tiny red spots called petechiae. Petechiae are caused by a shortage of cell fragments involved in clotting (platelets), which leads to bleeding under the skin. Affected individuals may also have hair loss (alopecia) and open sores (ulcerations) in the moist lining (mucosae) of the mouth, nose, or, less commonly, the genitals.About a third of people with SLE develop kidney disease (nephritis). Heart problems may also occur in SLE, including inflammation of the sac-like membrane around the heart (pericarditis) and abnormalities of the heart valves, which control blood flow in the heart. Heart disease caused by fatty buildup in the blood vessels (atherosclerosis), which is very common in the general population, is even more common in people with SLE. The inflammation characteristic of SLE can also damage the nervous system, and may result in abnormal sensation and weakness in the limbs (peripheral neuropathy); seizures; stroke; and difficulty processing, learning, and remembering information (cognitive impairment). Anxiety and depression are also common in SLE.People with SLE have episodes in which the condition gets worse (exacerbations) and other times when it gets better (remissions). Overall, SLE gradually gets worse over time, and damage to the major organs of the body can be life-threatening.