FRIDAY, Dec. 13, 2002 (HealthDayNews) -- Many doctors have little understanding of the devastating effects of lupus.
And those physicians who are up to speed have few effective ways to combat the disease, in which the immune system turns on the body, a panel of experts said yesterday.
What's more, the most common treatments can kill patients, most of whom are women, many of them black.
However, the news isn't all bad.
Several drugs are in development that offer new approaches to fighting lupus. And the nation's leading lupus advocacy group is working with the federal government to raise awareness of the disease.
"Lupus is a significant women's health issue that deserves greater resources," Sandra Raymond, chief executive officer of the Lupus Foundation of America, said during a teleconference designed to attract media attention to the disease.
No one knows how many Americans suffer from lupus, but estimates range as high as 4 million, almost all of them women of child-bearing age. The disease killed an estimated 1,406 Americans in 1998, a number that is relatively small compared to other illnesses but includes a large number of younger patients.
Lupus spurs the immune system to attacking the joints, skin, kidneys, heart, lungs, blood vessels and brain. The disease remains a major challenge to diagnose and treat, partly because "it varies in (symptoms) and severity from person to person," said Dr. Robert Lahita, rheumatology chief at St. Vincent's Hospital and Medical Center in New York City.
According to the experts, the early signs of lupus are similar to those of flu and numerous other illnesses.
Once the disease is diagnosed, "there are many drugs that are available, but most of them are currently inadequate," Lahita said.
In milder cases, anti-inflammatory drugs and mediation used to treat malaria can be effective, but they have side effects, Lahita said. In more serious cases, doctors turn to steroids, which "turn the immune system down to prevent it from creating all of the toxic cells that attack the patient's own tissues and cells," he said.
But the steroids themselves can cause serious side effects that can lead to death, according to the Lupus Foundation of America.
Lahita said researchers are working to develop drugs that would dampen the immune system without creating havoc throughout the body. Several drugs are in the late stages of testing in humans, he said.
Meanwhile, federal researchers are compiling and examining statistics about lupus.<>/p>
"We're trying to get a handle on how much lupus is really out there. This problem seems to be getting worse," said Dr. Chad Helmick, a co-investigator of a U.S. Centers for Disease Control and Prevention study into lupus death rates.
Middle-aged black women seem to be especially susceptible to the disease. Their death rate from lupus has risen by 70 percent over the last two decades, twice the increase among the general population. However, federal researchers aren't sure why the numbers are going up among black women.
"There might be a lot more lupus than there was 20 years, there may be people getting a later diagnosis, there may be issues of access to medical care," Helmick said.
Asian women and Latinas also suffer from higher rates of lupus than white women.
Raymond said patients often must go through several doctors -- and several years -- to finally get a correct lupus diagnosis.
Part of the problem is that general practitioners often know little about the disease. So the foundation and the federal government plan to release a CD-ROM in 2003 that will educate doctors about lupus, she said.
What To Do
Get more information about lupus from the National Institute of Arthritis and Musculoskeletal and Skin Diseases or the
Lupus Foundation of America.
