Lupus is the short name for systemic lupus erythematosus (SLE). Lupus is an autoimmune disease, which means that the body’s immune system attacks the body’s own cells as if they were invaders like germs or cancer cells. This leads to inflammation and damage to body tissues, such as those in the joints, skin, kidneys, heart, lungs, blood vessels, and brain.
Symptoms of lupus vary greatly, but some of the most common include extreme fatigue, painful or swollen joints (arthritis), unexplained fever, skin rashes, and kidney problems. Ongoing patient education is important to help people manage the symptoms of this condition.
Typically, lupus first affects people between the ages of 15 and 45 years old, but it can occur in childhood or later in life. Lupus is far more common in women than in men. It is also more common in African-American, Hispanic, Asian, and Native-American women than in Caucasian women.
Other, less common forms of lupus include:
- Discoid lupus erythematosus - A chronic skin disorder that involves a red, raised rash on the face, scalp, or elsewhere.
- Subacute cutaneous lupus erythematosus - The rash appears on areas of skin exposed to the sun.
- Drug-induced lupus - This form is caused by some medications. Symptoms are similar to SLE and they usually go away when the person stops taking the drug.
- Neonatal lupus - A rare form of lupus that sometimes occurs in babies of women who have autoimmune disorders.
Doctors Who Treat Lupus
As your lupus is diagnosed, treated and managed, you may encounter the following team of doctors and specialists. Because lupus may affect many body tissues and systems, some lupus patients see several specialists.
- Rheumatologist - A doctor who specializes in rheumatic diseases, including arthritis, lupus, and other inflammatory disorders often involving the immune system. A rheumatologist diagnoses and treats people with lupus, monitors the disease, and helps patients manage their disease.
- Clinical immunologist - A doctor specializing in immune system disorders, including lupus. A clinical immunologist diagnoses and treats people with lupus, monitors the disease, and helps people manage their disease.
- Internist or family physician - Doctors who provide general medical care for adults. Adults with lupus may be monitored by both an internist or family physician and a rheumatologist.
- Nephrologist - A doctor who specializes in kidney diseases. A nephrologist is involved in the care of patients whose lupus affects the kidneys.
- Cardiologist - A doctor who specializes in the heart and blood vessels. A cardiologist is involved in the care of patients whose lupus affects the heart and blood vessels.
- Hematologist - A doctor who specializes in blood disorders. A hematologist is involved in the care of patients whose lupus involves blood disorders.
- Endocrinologist - A doctor who specializes in problems related to glands and hormones. An endocrinologist is involved in the care of patients whose lupus affects gland and hormone activity.
- Dermatologists - A doctor who specializes in skin diseases. A dermatologist is involved in the care of patients whose lupus affects the skin.
- Neurologist - A doctor who specializes in disorders of the brain and nervous system. A neurologist is involved in the care of patients whose lupus affects the brain and nerves
How to Prepare for Your Lupus Doctor Visit
Having made your appointment with a healthcare provider, there are certain actions that you need to take in order to maximize the benefit of your doctor visit for lupus.
- Write down a list of all your symptoms, including any that may seem unrelated to lupus, and when they tend to occur.
- Make a list of all medications, vitamins and supplements that you’re taking. Include the dosage you are taking of each.
- Write down key personal information, including prior illnesses, diet and exercise habits, and any major stresses or recent life changes.
- If you are going to a rheumatologist, obtain a copy of your medical records and bring them to the appointment or ask your regular doctor to forward a copy to the rheumatologist.
- Be prepared to answer many questions and to take an active role in managing your disease. Lupus is a complex disease that requires ongoing medical care and active participation by patients.
Questions to Ask Your Doctor About Lupus
From your initial diagnosis throughout your treatment and care, you will have questions about your condition. Below is a list of questions to discuss with your doctor so you can make informed decisions about your lupus diagnosis and your care.
Questions About My Diagnosis
- What causes lupus?
- How is lupus diagnosed?
- Does having lupus put me at risk for other health problems?
- Will the skin rash cause scarring?
- Will I ever stop having lupus flare-ups?
- Will I be able to feel flare-ups coming on?
Questions About My Treatment
- What types of medication are used to treat lupus? Are there side effects?
- Will I have to take medication every day even when I feel fine?
- Will I have to take medication for the rest of my life?
- Will insurance pay for all my medications and visits to specialists?
- Will other medications I take interact with my lupus medications?
- Can I drink alcohol while taking lupus medication?
Questions About My Lifestyle & Family
- How often will I need to see the rheumatologist?
- Do I need to change my diet or daily activities because of my disease?
- Is there a support group for people with lupus?
- Is it okay for me to get pregnant?
- Will my children have lupus?
Common Tests or Labs to Diagnose Lupus
Diagnosing lupus is challenging because of the complexity of the disease and because there is no single test to definitively diagnosis lupus. The doctor must consider the medical history, symptoms, and test results to determine if a person has lupus. In the table below are laboratory tests that doctors use to confirm a diagnosis of lupus or rule out other causes of lupus-like symptoms.
|Antinuclear antibody (ANA) test||To look for autoantibodies that react against the nucleus of the body’s cells||Blood is drawn with a syringe, typically from the arm.
|Nearly all people with lupus test positive for ANA, but other conditions can result in a positive ANA test, including infections and other autoimmune diseases.|
|Other autoantibody tests: anti-DNA, anti-Sm, anti-RNP, anti-Ro (SSA), and anti-La (SSB)||To test for individual types of autoantibodies that are more specific to people with lupus||Blood is drawn with a syringe, typically from the arm.
|The presence of these antibodies increases the likelihood of a lupus diagnosis.|
|Anticardiolipin (or antiphospholipid) antibody test||To test for the presence of this antibody in the blood||Blood is drawn with a syringe, typically from the arm.||The presence of this antibody can indicate increased risk of certain complications of lupus.|
|Routine blood tests||To check complete blood count, blood chemistry, erythrocyte sedimentation rate (ESR), and complement levels (substances that help antibodies fight invaders)||Blood is drawn with a syringe, typically from the arm.||ESR provides information about the amount of inflammation in the body; low complement levels may indicate the immune system is being taxed by a large immune response.|
|Skin biopsy||To test a sample of a lupus skin lesion for signs of inflammatory or immune disease||After pain medication is administered at the biopsy site, a small piece of skin is removed either by shaving off a thin piece or cutting out a small piece.||The test will show whether the skin sample contains markers for inflammatory or immune diseases, as well as the presence of bacteria or other infectious organisms.|
|Kidney biopsy||To confirm kidney damage resulting from lupus and determine the type of treatment to use||A light sedative is administered and pain medication is injected at the site where the biopsy needle will be inserted. The biopsy needle is inserted through the skin and into the kidney to remove a small piece of tissue for testing.||The test will show if there is damage to the kidney tissues, deposits, scarring, or infection.|
Common Medications and Treatments for Lupus
The doctor will develop an individualized treatment plan aimed at preventing lupus flares, treating flares when they do occur, and minimizing organ damage and complications. The table below describes the common medications used to treat lupus.
How it works
|Nonsteroidal antiinflammatory drugs (NSAIDs)||
|B-lymphocyte stimulator (BLyS) inhibitors||
In addition, people with lupus must take the following steps to manage their disease:
- Eating well, exercising regularly, and not smoking
- Wearing protective clothing, sunglasses, and sunscreen when in the sun
- Regular preventive health care such as blood pressure and cholesterol screening, gynecologic and breast exams for women, and prostate-specific antigen testing for men
- Learning to recognize the warning signals that a flare is imminent
- Maintaining good communication with their doctors
- Regular visits to the rheumatologist to discuss symptoms and potential changes to the treatment plan
Alternative therapies may be added to the regular treatment regimen, including special diets, nutritional supplements, fish oils, ointments and creams, chiropractic treatment, and homeopathy. These therapies may help relieve symptoms or medication side effects or help patients cope with the disease. However, they are not proven to slow the disease process or prevent organ damage.