- The Washington Times - Sunday, April 22, 2001

Stacey Adesso has good days, most of the time. The 30-year-old Sterling woman has a full-time job with a nonprofit organization and a busy social life. She takes the drugs her doctor prescribes and slows down when she feels fatigued.

She has had many bad days, though. She has endured high blood pressure and lesser health issues such as joint pain and sun sensitivity. Miss Adesso also has had major health problems, such as paralysis that left her temporarily wheelchair-bound. Strong chemotherapy eventually corrected that problem.

For 18 years, Miss Adesso has lived with lupus, a chronic autoimmune disease that causes inflammation of various parts of the body, especially the joints, skin, blood and kidneys.

"My immune system basically attacks itself," Miss Adesso says. "It is just a part of me. I have learned to take care of myself. You learn what your body is telling you. You don't need to make your choices because you have an illness; you have to make your choices and adapt them to how you feel."

Between 1.4 million and 2 million Americans have been diagnosed with lupus, according to the Lupus Foundation of America. That means it affects one out of 185 persons. While it can occur in men or women of any age, 90 percent of lupus sufferers are women.

The disease appears to have a genetic link, but scientists have not identified one single genetic cause. Lupus likely is caused by a mixture of genetics, environment and hormones, says Dr. Michelle Petri, a rheumatologist and director of the Lupus Center at Johns Hopkins University Medical Center.

The reason the estimates of patients with the disease vary widely is that lupus can be difficult to diagnose. The symptoms may come and go and may mimic other illnesses, says Dr. Herbert Baraf, a Wheaton rheumatologist and a clinical professor of medicine at George Washington University.

"Lupus can affect virtually any organ in any way," he says. "It can affect the eyes, the kidneys, the gastrointestinal tract. Different people have different manifestations. If you put 10 people with lupus in a room, most people would feel no one else there had the same problem."

Indeed, when Miss Adesso first was diagnosed, her aching joints were dismissed as "growing pains" and, later, arthritis. It wasn't until she was found to have fluid in her lungs that caused her nearly to stop breathing that Miss Adesso's lupus was diagnosed.

For Rita Hildebrant, 59, the symptoms were different, but the diagnosis was clearer. When Mrs. Hildebrant, of Towson, Md., found herself extremely fatigued 20 years ago, she assumed it was from the demands of working while raising four children.

Mrs. Hildebrant noticed that when she went out in the sun, her cheeks would break out in a purple rash. One day, while sitting in her car, the fingertips on both her hands turned white.

Six months later, her doctor determined that Mrs. Hildebrant had lupus.

"By that point, it was a relief to have a name for my condition," Mrs. Hildebrant says. "I felt like I could move on; I had to learn as much as I could."

The symptoms may vary, but there is an underlying, unifying reason, Dr. Petri says.

"A trained rheumatologist should be able to make the diagnosis confidently," she says.

While blood tests such as the anti-nuclear antibody test can diagnose lupus, that test sometimes can be unreliable, Dr. Petri says.

Dr. Petri usually orders a more sophisticated battery of blood and urine tests to make a diagnosis. Symptoms that would lead her to order those tests include a photosensitive rash on the face or ears, swollen joints and kidney problems. More serious symptoms would be seizures, strokes and inflammation of the lining of the lungs or heart.

Making research advances

Fifty years ago, the prognosis for lupus was grim, with a majority of patients dying from complications within a year. Today, there is a 10-year survival rate of more than 90 percent, Dr. Baraf says.

A big part of the better prognosis is due to drug therapy, says Dr. Gabor Illei, a rheumatology researcher at the National Institutes of Health.

Since the late 1940s, a majority of patients have been treated with various dosages of prednisone, a corticosteroid.

"The innovation of prednisone made a huge difference in the mortality rate," Dr. Illei says.

Prednisone reduces inflammation, reduces muscle and joint pain, suppresses the immune system and controls the involvement of major organs. But prednisone use must be monitored carefully as it can lead to serious side effects, ranging from cataracts to hypertension to osteoporosis, Dr. Petri says.

"Prednisone can be an easy and quick fix," she says, "but be wary of it. Fifty percent of our patients and we have almost 1,000 patients have been permanently damaged, either by the disease or by prednisone. Doctors should find a way to steroid-spare."

Two classes of drugs that can help doctors do that are anti-malarials and immunosuppressives.

Anti-malarials were developed to fight malaria in tropical countries, but researchers later found the drugs could be used to treat joint pain, skin rashes, fatigue and fever. The most popular one for lupus management is Plaquenil.

In some patients, anti-malarials are effective enough for them to stop daily dosages of prednisone, Dr. Illei says. The most serious side effects from anti-malarials are retina damage and nausea.

Immunosuppressives are generally the same sort of medications given to people to prevent rejection after undergoing an organ transplant. Other types of immunosuppressives are cytoxic agents, which usually are used in chemotherapy for cancer patients. The cytoxic drugs work by targeting and damaging the antibodies that react against a person's own cells, thereby reducing the hyperactive immune response, Dr. Illei says.

Side effects of immunosuppressives include hair loss (in the cytoxic drugs only) and anemia.

Miss Adesso was treated with seven doses of the cytoxic agent Cytoxin after nerve damage in her legs and feet left her unable to walk in 1992. She also has been taking Plaquenil and prednisone. Recently, she has been taking part in an NIH drug trial for a new immunosuppressant that has enabled her to drastically reduce the dose of prednisone.

"I have gotten sick every time I have tried to stop taking prednisone," Miss Adesso says. "Now, I am down to 1 milligram [a day]. I might be off it soon for the first time in 18 years."

While treatment with drugs is a management tool, it is not a cure. Still, many doctors say they believe they are getting closer to one.

"Our understanding is increasing exponentially," Dr. Baraf says. "With the discovery of the human genome, we will get pathways of information. Genetic studies have already had a big impact on rheumatoid arthritis, which is a cousin of lupus."

Living well with lupus

Because lupus for better or worse evolves over time, patients need to adapt along with it, Miss Adesso says.

That could be something as small as wearing 65 SPF sunblock when going outside, or as big as stopping work.

Mrs. Hildebrant has had to do both of those things during the past 20 years. She found it especially hard at first because she loved the outdoors especially boating, swimming and attending lacrosse games.

One time, she risked sitting in the sun to watch one of her son's lacrosse games and wound up hospitalized with a serious lupus flare-up. She is more careful now, she says.

"I wait for a cloudy day," she says. "Then I can go to a game or spend time outdoors."

Mrs. Hildebrant's joints have been particularly affected by the disease. She has had arthroscopic surgery on her knees, ankles, shoulder and spine.

Despite the disease and its complications, Mrs. Hildebrant rarely took time off from her job in the registrar's office at Johns Hopkins University. She was so fatigued at work, her boss put a cot in a back room so she could take rest breaks.

"In my case, the disease made me more of a fighter," she says.

But when lupus began to take a toll on her mind, Mrs. Hildebrant says, she painfully decided it was time to retire. In 1997, she began having headaches and had short-term memory problems. An MRI showed Mrs. Hildebrant had a small stroke, a relatively common complication of lupus.

"I felt quite remarkable I had maintained my job for 18 years," she says. "The first six months after retiring were really hard. I was in mourning. I missed the contact with other people."

Mrs. Hildebrant has since devoted her time to volunteering for the Maryland Lupus Foundation and enjoying her 10 grandchildren. She says she tried not to dwell on her disease, but is fearful of having a more serious stroke.

"I am not afraid of dying," she says. "What I am most afraid of is having a stroke and not being able to be independent."

Miss Adesso has similar concerns. That is why she pays close attention to what her body is telling her, she says. Since overcoming the nerve damage in her legs, Miss Adesso's lupus has been under much better control.

When she was younger, particularly in high school and college, Miss Adesso says, she did not take optimum care of herself. She would go to the beach or overexert herself, then would suffer a flare-up.

"It was predictable," she says. "I would go to the beach, then have a flare-up and would be in the hospital for two months with a high fever. I hadn't really accepted the fact I had lupus. I depended on my mom to remind me a lot."

Around that time, Miss Adesso began suffering from Reynaud's phenomenon, a disorder (related to the lupus) that limits blood flow to her fingers, resulting in painful blisters and loss of feeling. She now must be careful not to let her hands get cold.

"I am now good about mittens," she says. "I have some of those stay-warm rocks that I heat up and keep in my pockets."

Miss Adesso says what served as the big wake-up call was the paralysis and having to relearn how to walk.

"I was 23 and realized I needed to take responsibility for my health," she says. "I have had little things, but nothing major since. I am definitely taking better care of myself."

She says she has found support by becoming good friends with another lupus patient close to her age and is a phone buddy to other young women with the disease.

Miss Adesso says that as long as she takes care of herself and listens to her doctors, she is not worried about the future.

"From day one, I have said I can do what everyone else can," she says. "You have to learn what your body is trying to tell you, and you have to be flexible."

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