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Lupus Poses Many Challenges

Part 1 of 4 - Uniqueness of Lupus

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Updated June 13, 2014

What Is Lupus?

Systemic lupus erythematosus (SLE), also commonly called lupus, is a chronic autoimmune disease that affects 1.5 million to 2 million Americans, according to the Lupus Foundation of America (LFA):

  • 9 out of 10 people who have it are women, and it mostly affects women of childbearing age, those between ages 15 and 44.
  • Men, children younger than 15, and older people also get lupus.
  • People of any race or ethnicity can develop lupus, but blacks, Hispanics, Asians, and American Indians are at increased risk.

The body's natural defenses, called the immune system, protect us from viruses, bacteria, and other foreign invaders. But in people with lupus, the immune system can't tell the difference between foreign substances and the healthy cells and tissues.

There is no cure for lupus, but, in most cases, the disease can be managed. Because of better detection and early treatment, between 80% and 90% of people with lupus can look forward to a normal lifespan, according to the LFA.

"Although the overall outlook has improved, it is a disease that must be monitored very carefully," says David Isenberg, M.D. "It has a major effect on quality of lives, and a smaller, but significant, number of people still die from it."

Seeking Better Treatment Options for Lupus

Maribel Ramirez, 43, was diagnosed with lupus in 1989 and started a support group in the Houston area in 1995 for Spanish speakers who have the disease. "I see people dying, and it's very difficult," she says. "We are desperate for better treatments." Ramirez has suffered damage to her lungs, kidneys, and heart. In 1994, she had a stroke due to vasculitis, a condition in which blood vessels become inflamed. "I worry about the disease and all the medications that I've been taking for so long," she says.

There are effective drugs that decrease inflammation and suppress the immune system in people with lupus, but these drugs also can lead to damaging side effects. Doctors and patients have to weigh carefully the benefits and risks of treatment. Isenberg likens treating patients with lupus to putting them on a fence between two fields.

"One side represents the effects of the disease, and the other represents the side effects of treatment," he says. For example, people with lupus are at increased risk for developing hardening of the arteries that can cause a heart attack or stroke. The risk is due partly to having lupus and partly to taking corticosteroids, which decrease inflammation caused by the disease.

Another challenge, says Petri, is that there are no treatments for two common complaints of lupus patients:

Ramirez says she once had to pull off the freeway and call a friend for help because she was lost, even though she was close to home.

Lupus Disease Researchers Face Challenges

Researchers are looking for lupus treatments that are safer and more targeted, but the uniqueness of the disease poses challenges for drug development.

  • The exact cause of lupus is unknown.
  • The disease varies in intensity.
  • The symptoms are wide-ranging, sometimes involving multiple organs.
  • Symptoms also tend to come and go, with active periods, called flares, and quiet periods when the disease is in remission.

In March 2005, the FDA released a draft guidance for industry on testing drugs for lupus in clinical trials. The guidance includes a general discussion of outcomes and measurements of disease activity, as well as claims that the agency may be willing to approve if they are supported by substantial evidence. "This guidance is an important step in stimulating new drug development for lupus treatment," says Acting FDA Commissioner Dr. Lester M. Crawford. "We are intensely interested in this area."

What Are the Symptoms of Lupus?

The most common symptoms of lupus are:

  • skin rashes
  • extreme fatigue
  • arthritis
  • unexplained fevers
  • kidney problems

According to the LFA, about 40% of people with lupus have a rash that spreads across the nose and over the cheeks in the shape of a butterfly, called the malar rash. "Because lupus can affect any organ, the disease can look different in different people," says David Wofsy, M.D.

Inflammation in one person might lead to multiple organ damage, whereas another person might have just occasional joint pain. "There are many people who never encounter the life-threatening manifestations of the disease," Wofsy says.

When lupus is severe, such as with serious kidney damage, the symptoms are more obvious to a physician. But, in most cases, people experience mild symptoms, which can make the illness hard to diagnose.

Lupus also may develop gradually. "In the hands of someone knowledgeable about lupus, it can be easy to diagnose," Wofsy says. "But it's not uncommon to hear that someone with lupus went to several doctors before being diagnosed or was misdiagnosed." Experts say that sometimes, it can take a couple of years to figure out what's going on.

Go on to Part 2 --- Lupus Disease Poses Challenges --->

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