Lupus is a short name for a disease called “lupus erythematosus.” The word lupus means wolf in Latin. The skin rash that some patients get can form a butterfly pattern over the bridge of the nose, resembling the bite of a wolf. Lupus is called an “autoimmune” disease because the immune system, which usually protects the body from disease, turns against the body, causing harm to organs and tissues.
There are two types of lupus. Systemic lupus erythematosus can harm your skin, joints, kidneys and brain and may be fatal. The other type, called “discoid” lupus erythematosus, affects only your skin.
WHAT CAUSES LUPUS?
No one knows what causes the disease. Your family history and things in your environment such as infections, viruses, toxic chemicals or pollutants (car fumes, factory smoke) may play a role in causing the disease. Men and women of all ages and races get lupus. However, it is about 10 times more common in women than in men. About 500,000 Americans have lupus.
WHAT ARE THE SYMPTOMS OF LUPUS?
Different people get different symptoms. These may include skin rashes, joint pain, hair loss, sun sensitivity, tiredness, weight loss, fever, swelling of lymph glands, chest pain and nerve involvement.
HOW CAN LUPUS HARM THE KIDNEYS?
Kidney damage from lupus can be mild or severe. It can cause damage to the filtering units (glomeruli) of the kidney. Since these filtering units clear your blood of waste, damage to them can cause your kidneys to work poorly or not at all. About 90 percent of lupus patients will have some kidney damage, but only two to three percent actually develop kidney disease severe enough to require treatment.
The kidney disease may be “silent” and not cause any symptoms. However, you may have dark urine, flank pain, high blood pressure, weight gain from extra fluid and swelling around your eyes and in your hands and feet.
HOW DO I KNOW IF I HAVE LUPUS?
Your doctor will do a physical examination, get your medical history and do special tests such as x-rays and a blood test for “antinuclear” antibody.
HOW IS LUPUS TREATED?
Lupus is treated with drugs that block your body’s immune system. Some of these are prednisone, azathioprine, cyclophosphamide or cyclosporine.
DO THESE TREATMENTS HAVE SIDE EFFECTS?
Yes. These drugs have some side effects, such as weight gain and increased susceptibility to infections and tumors. Fortunately, these side effects usually are manageable for most patients.
DO I NEED TO FOLLOW A SPECIAL DIET?
Sometimes. All patients should follow a well-balanced diet. When the disease is active, you may have to follow some restrictions. You need to talk with your doctor or dietitian about the best diet for you.
If you develop kidney disease, you may need to eat less protein and sodium (salt). If you have high blood pressure, you should be sure to take the drugs prescribed to control your pressure. If you are overweight, losing weight may help to control your blood pressure.
HOW CAN I TELL IF THE DISEASE HAS HURT MY KIDNEYS?
The doctor can tell if lupus has harmed your kidneys by finding protein or blood in your urine. Also, the levels of urea and creatinine in your blood will be high because your kidneys are not getting rid of these waste products as well as usual. Your doctor may want to collect a 24-hour urine sample.
WHAT HAPPENS IF MY KIDNEYS FAIL?
If your kidneys fail, you can be treated with dialysis or a kidney transplant. Lupus patients do as well with these treatments as people who have other types of kidney disease.
Many patients with lupus kidney disease have received a kidney transplant. The drugs used to prevent your body from rejecting the new kidney are the same or similar to those used to treat lupus. It is unusual for lupus to come back in the new kidney. Most of the time, the lupus stays inactive. Lupus patients with new kidneys do as well as any other patients with transplanted kidneys.
WHAT IS MY LONG-TERM OUTLOOK?
Most patients do well long-term. You may need to take drugs over many years. Even patients who have less involvement should have periodic checkups.
WHAT CAN I DO TO HELP MYSELF?
You should learn more about the disease and the factors that cause it to flare up. One of these factors is sun exposure. You should avoid outdoor activities between 10 a.m. and 4 p.m. If you must go out, you should wear strong sunscreens, wide-brimmed hats and long-sleeved shirts. You need to follow your doctor’s orders carefully and take your medicines as directed.
Tiredness also can cause the disease to flare up. You should plan your physical activities and schedule rest periods. Planned exercise is helpful.
Chronic illness also requires understanding and support from family members. When the disease is active, lupus patients may have decreased ability to handle household or job-related tasks. The ability to be flexible will go a long way toward learning to live with lupus.
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©2010 National Kidney Foundation. All rights reserved. This material does not constitute medical advice. It is intended for informational purposes only. No one associated with the National Kidney Foundation will answer medical questions via e-mail. Please consult a physician for specific treatment recommendations.