Fibromyalgia & Lupus National Association
What is Lupus
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
· Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone.
Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
· Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
It is believed that 5 million people throughout the world have a form of lupus.
Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.
Women of color are 2-3 times more likely to develop lupus.
· People of all races and ethnic groups can develop lupus.
· More than 16,000 new cases of lupus are reported annually across the country.
What Causes Lupus
No gene or group of genes has been proven to cause lupus. Lupus does, however, appear in certain families, and when one of two identical twins has lupus, there is an increased chance that the other twin will also develop the disease. These findings, as well as others, strongly suggest that genes are involved in the development of lupus. Although lupus can develop in people with no family history of lupus, there are likely to be other autoimmune diseases in some family members. Certain ethnic groups (people of African, Asian, Hispanic/Latino, Native American, Native Hawaiian, or Pacific Island descent) have a greater risk of developing lupus, which may be related to genes they have in common.
While a person’s genes may increase the chance that he or she will develop lupus, it takes some kind of environmental trigger to set off the illness or to bring on a flare. Examples include:
· ultraviolet rays from the sun ultraviolet rays from fluorescent light bulbs
· sulfa drugs, which make a person more sensitive to the sun, such as: Bactrim® and Septra® (trimethoprim-sulfamethoxazole); sulfisoxazole (Gantrisin®); tolbutamide (Orinase®); sulfasalazine (Azulfidine®); diuretics sun-sensitizing tetracycline drugs such as minocycline (Minocin®)
· penicillin or other antibiotic drugs such as: amoxicillin (Amoxil®); ampicillin (Ampicillin Sodium ADD-Vantage®); cloxacillin (Cloxapen®) an infection a cold or a viral illness exhaustion an injury
· emotional stress, such as a divorce, illness, death in the family, or other life complications
· anything that causes stress to the body, such as surgery, physical harm, pregnancy, or giving birth
Although many seemingly unrelated factors can trigger the onset of lupus in a susceptible person, scientists have noted some common features among many people who have lupus, including:
· birth exposure to the sun an infection being pregnant giving a drug taken to treat an illness
However, many people cannot remember or identify any specific factor that occurred before they were diagnosed with lupus.
Hormones are the body’s messengers and they regulate many of the body’s functions. In particular, the sex hormone estrogen plays a role in lupus. Men and women both produce estrogen, but estrogen production is much greater in females. Many women have more lupus symptoms before menstrual periods and/or during pregnancy, when estrogen production is high. This may indicate that estrogen somehow regulates the severity of lupus. However, it does not mean that estrogen, or any other hormone for that matter, causes lupus.
Frequently Asked Questions
Is lupus stress related?
We do not know for certain. There are many anecdotal reports (personal accounts) of lupus flaring during or after a stressful time, but this question requires further scientific study.
Does lupus occur more often in certain geographical areas?
No. There are on-going studies of several suspected "clusters" of lupus case but no evidence has emerged that suggests lupus is more prevalent in specific areas.
Is lupus related to pollution or toxic chemicals?
We do not know. The cause of lupus, and many other autoimmune diseases, remains unknown. The respective roles of genetic and environmental factors in triggering lupus remain to be determined. The National Institutes of Health (NIH), the principal biomedical research agency of the United States Government established the National Institute of Environmental Health Sciences (NIEHS) to study issues related to environmental health. A meeting in September 1998 at Research Triangle Institute(RTI) in Durham, NC organized by NIEHS, looked at autoimmunity and the environment and specifically lupus. A review of the discussion was published in the medical journal, Arthritis and Rheumatism (1998 Oct; 41(10): 1714-24) in an article titled: "Hormonal, Environmental, and Infectious Risk Factors for Developing Systemic Lupus Erythematosus" by Cooper GS, Dooley MA, Treadwell EL, St Clair EW, Parks CG, Gilkeson GS.
Can something in your diet cause lupus?
We do not believe so.
Is there any truth to the claims being circulated on the Internet that lupus is caused by the artificial sweetener, aspartame?
We are aware there is an email message circulating on the Internet warning individuals with lupus about dangers associated with using the artificial sweetener aspartame. The Lupus Foundation of America consulted with the chair of the LFA Medical Council, Evelyn Hess, MD, MACP, MACR. Dr. Hess is one of the nation's leading researchers in the field of lupus specializing in environmental influences. According to Dr. Hess, there is, as of now, no specific proof of an association with aspartame as a cause or worsening of SLE. People with lupus should always consult with their physician before making any changes in their medical treatment, diet, exercise or other routine based on information received via the Internet or other sources lacking known credentials.
Forms of Lupus
Systemic Lupus Erythematosus
Systemic lupus is the most common form of lupus, and is what most people mean when they refer to "lupus." Systemic lupus can be mild or severe. Some of the more serious complications involving major organ systems are:
· inflammation of the kidneys (lupus nephritis), which can affect the body’s ability to filter waste from the blood and can be so damaging that dialysis or kidney transplant may be needed
· an increase in blood pressure in the lungs (pulmonary hypertension)
· inflammation of the nervous system and brain, which can cause memory problems, confusion, headaches, and strokes
· inflammation in the brain’s blood vessels, which can cause high fevers, seizures, behavioral changes,
· hardening of the arteries (coronary artery disease), which is a buildup of deposits on coronary artery walls that can lead to a heart attack
More information about how lupus affects various organs and tissues is available in the LFA fact sheet series, "The Body & Lupus."
Cutaneous Lupus Erythematosus
Cutaneous refers to the skin, and this form of lupus is limited to the skin. Although there are many types of rashes and lesions (sores) caused by cutaneous lupus, the most common rash is raised, scaly and red, but not itchy. It is commonly known as a discoid rash, because the areas of rash are shaped like disks, or circles. Another common example of cutaneous lupus is a rash over the cheeks and across the bridge of the nose, known as the butterfly rash. Other rashes or sores may appear on the face, neck, or scalp (areas of the skin that are exposed to sunlight or fluorescent light), or in the mouth, nose, or vagina. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.
Approximately 10 percent of people who have cutaneous lupus will develop systemic lupus. However, it is likely that these people already had systemic lupus, with the skin rash as their main symptom.
Drug-induced Lupus Erythematosus
Drug-induced lupus is a lupus-like disease caused by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but only rarely will any major organs be affected.
The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension), procainamide (used to treat irregular heart rhythms), and isoniazid (used to treat tuberculosis). Drug-induced lupus is more common in men because they are given these drugs more often; however, not everyone who takes these drugs will develop drug-induced lupus. The lupus-like symptoms usually disappear within six months after these medications are stopped.
Neonatal lupus is a rare condition that affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb. At birth, the infant may have a skin rash, liver problems, or low blood cell counts, but these symptoms disappear completely after several months with no lasting effects. Some infants with neonatal lupus can also have a serious heart defect. With proper testing, physicians can now identify most at-risk mothers, and the infant can be treated at or before birth. Most infants of mothers with lupus are entirely healthy.
What are the Symptoms of Lupus
Because lupus can affect so many different organs, a wide range of symptoms can occur. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease.
The most common symptoms of lupus, which are the same for females and males, are:
· extreme fatigue (tiredness)
· painful or swollen joints
· anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
· swelling (edema) in feet, legs, hands, and/or around eyes
· pain in chest on deep breathing (pleurisy)
· butterfly-shaped rash across cheeks and nose
· sun- or light-sensitivity (photosensitivity)
· hair loss
· abnormal blood clotting
· fingers turning white and/or blue when cold (Raynaud’s phenomenon)
· mouth or nose ulcers
Many of these symptoms occur in other illnesses besides lupus. In fact, lupus is sometimes called "the great imitator" because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases.
What are the Risks for Developing Lupus
More than 90 percent of people with lupus are women.
Symptoms and diagnosis occur most often when women are in their childbearing years, between the ages of 15 and 44. Symptoms of lupus will occur before age 18 in 15 percent of the people who are later diagnosed with the disease.
In the United States, lupus is more common in people of color -- African Americans, Hispanics/Latinos, Asian Americans, Native Americans, Native Hawaiians and Pacific Islanders -- than in the Caucasian population. It also appears that lupus develops at an earlier age and is more severe among members of these ethnic groups.
Relatives of people with lupus have an approximately 5-13 percent chance of developing lupus. However, only about 5 percent of children will develop lupus if their mother has lupus.
Frequently Asked Questions
Can I have my children tested?
Testing isn't advisable in individuals who do not have symptoms.
The history of lupus erythematosus (LE) has been reviewed in two of the major textbooks on this disease1,2 and was the subject of an article in a journal in 1983.3 This article concentrates on developments in the present century which have greatly expanded our knowledge about the pathophysiology, clinical-laboratory features, and treatment of this disorder.