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Media Releases
Lupus Can Be Silent, Hard to Diagnose
Columbia, Mo. (Oct. 18, 2005) - It is a predatory disease that strikes women in their prime. Some 1.4 million people have it, making it more common than disorders such multiple sclerosis, leukemia, muscular dystrophy and cystic fibrosis--combined. Yet, few people have heard of it. It is called systemic lupus erythematosus (SLE) or lupus. October is lupus awareness month, and rarely has such a mysterious disease deserved so much public attention. But what makes lupus such an intriguing disorder?
For one thing, the cause of lupus remains unknown, its course unpredictable and its outcome uncertain. Many people have a mild form of the disease and go on to live long lives. In others, complications can be life threatening since the disease can damage vital organ systems including the kidneys, the heart, the lungs and the brain.
Lupus, an autoimmune disease caused by the immune system attacking our cells--the tiny building blocks that make up our bodies--has intrigued physicians and researchers for decades. Understanding the immunology of lupus could help researchers better understand other immunological disorders such as cancer and even AIDS, explains Dr. Daniel Wallace, author of "The Lupus Book."
"'Know lupus and you know medicine,' medical students are often told," Wallace says in the book.
One fascinating aspect of lupus is that it can manifest itself in many different ways, mimicking symptoms of other diseases, so that at times it is hard to recognize. Symptoms tend to come and go. A person with lupus might have a flare-up of symptoms and then be perfectly fine for months. Many newly diagnosed patients have had the signs of the disease for an average of three years prior to diagnosis, Wallace says. Usually severe forms of the disease are easy to diagnose, but milder forms can remain under the radar for months if not years.
"The more severe the lupus, the easier it is to diagnose," says Dr. Sara E. Walker, rheumatologist at the University of Missouri-Columbia School of Medicine and co-principal investigator for the Missouri Arthritis Rehabilitation Research and Training Center (MARRTC). "If a young woman has findings that are very characteristic of lupus, such as a red butterfly-shaped rash on the face, fever and joint pains and is found to have anemia or a low white blood cell count, for example, it would be clear that lupus is a possible diagnosis."
Join pain (arthralgia) and painful joint swelling (arthritis) are common early findings in lupus. A 2003 study conducted by Turkish researchers found a gap of 20 to 30 months between onset of lupus-caused arthritis and diagnosis. The researchers recommended that women under 45 who develop arthritis pain should be carefully evaluated to rule out lupus.
Walker warns that joint pain should be evaluated carefully with a medical history and physical examination, but not all patients require expensive tests.
"Lupus is a multi-system disease. If a young woman has joint pain and nothing else, and the physical exam is normal, the chance of her having lupus is very small," Walker explains.
The decision to do extensive testing is ultimately a choice every physician will have to make. And we're always thinking about the cost of testing a patient against the likelihood that a patient has a disease."
What is important, however, is that young women with arthritis pain be monitored carefully. If lupus is suspected the individual can be examined again six months or a year later, Walker suggests.
Lupus can affect several vital organs. Damage to these organs usually manifests itself in one way or another. One exception is kidney damage.
"The part of the body that can be damaged with no symptoms is the kidneys," Walker warns. 'People don't feel it when their kidneys are attacked. Kidneys damaged by lupus don't hurt."
Walker says that any person diagnosed with lupus should have regular tests to monitor kidney function including urine analysis, blood tests and, possibly, a kidney biopsy.
Lupus requires regular monitoring and testing in order to prevent or minimize damage to vital organs. Therefore, a person's prognosis depends a lot on accepting that she or he has a chronic disease that requires regular visits to the doctor. Denial is not uncommon, Walker says. She has observed denial in young women who do not see themselves as victims of a chronic and potentially serious disease.
"Denial is rough on the patient and rough on the doctor," Walker says. "We want to treat people but we can't if they disappear. Some people have their lives planned and they feel they know what their goals are. These folks can have a lot of trouble dealing with lupus."
In fact, it is driven, high-achieving people who often might have the hardest time accepting their condition, Walker remarks.
"People like these want to have control over their destiny and one way to do so is by achieving tangible things. But with lupus, how do you deal with something your physician cannot cure?"
While there is no cure for lupus, the disease can be controlled.
"Almost every case of lupus can be controlled," Walker says. "We can't cure it but we can control it."
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"Is It Lupus or Not?"
This, indeed, is the question for many physicians. But diagnosing a disease as fickle and cunning as lupus is not a clear-cut process. There are no cookie-cutter recipes for diagnosing lupus. Symptoms vary widely from one person to another, and what constitutes lupus in one person, may not qualify as lupus in another patient, Walker says.
The American College of Rheumatology (ACR) has created a classification system to distinguish lupus from other autoimmune diseases. Generally, if a person meets four out of 11 criteria, this person has an extremely high probability of having lupus.
"We know that if a person has four out of the 11 findings, there is 98 percent chance that lupus is the problem, but these criteria are not absolute since it's possible to have lupus and only meet three of the criteria," Walker says.
ACR Lupus Classification System
Skin criteria
Butterfly-shaped rash over the cheeks and nose
Discoid rash, red, raised patches often found on the face and scalp
Sun sensitivity such as rash after spending time in the sun or other form of ultraviolet exposure
Recurrent mouth and nose ulcers
Systemic criteria
Arthritis with tender and swollen joints
Inflammation of the thin sack that encloses the lungs or the heart
Kidney disorder manifested by elevated protein in the urine or "casts" (cells that are stuck together and show up on examination of the urine through a microscope)
Neurologic disorders, such as seizures or psychosis with no other evident cause
Laboratory criteria
Anemia caused by cells breaking up (hemolytic anemia), low white blood cell count, or low platelet count in the blood
Immunologic disorder defined by positive blood tests antibodies to double-stranded DNA, anti-Sm, or antiphospholipid antibodies
Positive ANA (antinuclear antibody) test
Any person with symptoms suggestive of lupus should be evaluated further with lab tests including blood work and urine analysis.
To arrange an interview with a MARRTC exper, contact Becky Woelfel, Senior Information Specialist, at (573) 882-2914 or by email at woelfelr@missouri.edu
The Missouri Arthritis Research Rehabilitation and Training Center (MARRTC) was established in 1971 at the University of Missouri-Columbia Arthritis Center. MARRTC is funded by the U.S. Department of Education's National Institute on Disability and Rehabilitation Research (H133B031120) and is the only federally funded arthritis rehabilitation research and training center in the country.
As part of the MU Health Communication Research Center (HCRC), MARRTC's mission is to become a national leader in the areas of disability management and communication, improve the quality of life and promote independent living among people who have arthritis and arthritic conditions. MARRTC's core message is "Disability is everyone's issue."
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