MANILA, Philippines - Robelle Mae Tananguran was on her second year in Medicine proper when she was diagnosed with systemic lupus erythematosus (SLE). “I was forced to make the painful decision to take a leave of absence from school,” she relates. The exact cause of lupus is not known, but stress has been associated with the chronic, often debilitating disorder. It did not help that the heavy demands of her studies made Robelle susceptible to a lot of stress. Systemic lupus erythematosus (SLE) is the more potentially serious type of lupus as it can cause damage to several major organs of the body. A milder form is known as discoid lupus erythematosus (DLE), which usually affects only the skin.
“Lupus is an autoimmune disease which can affect joints and muscles as well as the skin, and can involve one or more vital organs such as the kidneys, heart, lungs, brain, blood vessels, and the nervous system It is characterized by varying degrees of inflammation in all or any of these areas,” says Dr. Sandra Navarra, associate professor (rheumatology and clinical immunology) at the University of Santo Tomas Faculty of Medicine and Surgery.
“Inflammation is a reaction by the body to any form of injury, producing warmth, swelling, redness, and pain,” Dr. Navarra explains. “In lupus, the injury is caused by an excess production of antibodies which, instead of protecting the body by attacking germs or other ‘foreign invaders,’ react against substances normally present in the body. Why the body goes against its own self, we do not know for sure. It is possible that genes, infectious agents, drugs or other physical agents are responsible triggering factors.”
SLE has many visible and hidden manifestations, the extent and severity of which can vary from person to person. There is no definite pattern of the symptoms at the onset.
Fever, weakness, fatigue, or weight loss may be the first signs of illness. Unusual hair loss or mouth lesions may occur. A skin rash may appear on the face, neck or arms. This may take a butterfly appearance over the nose and cheeks. On those who are very sensitive to ultra-violet light, the rash may appear or get worse after exposure to the sun.
Another early sign of the disease may be joint pains involving the hands, wrists, elbows, knees, or ankles. Other common symptoms are muscle aches, swollen lymph nodes, and lack of appetite. The disease is sometimes associated with psychological and psychosocial symptoms such as anxiety, depression, and mood disorders.
“I became moon-faced,” Sylvia Reyes relates in her testimony before an audience of medical students at the University of Santo Tomas recently. “I had to cut my hair since it became so thin. I developed acne. It was a cause of embarrassment. I became depressed. I wanted to die.” Fortunately, she had a very supportive husband. “He reminded me that unlike cancer, lupus is not terminal. It is not contagious. It can be controlled, so I can live a normal life.” That was 19 years ago. Sylvia, whose work at the Department of Foreign Affairs sends her on foreign assignments, has learned not only to live with her illness, but she has also become an advocate.
Public awareness of the disease is still lacking so that many remain undiagnosed. While early diagnosis is difficult, it is particularly important so that treatment can begin before irreversible tissue damage occurs or becomes life-threatening. “Due to the complexities of the disease, SLE patients often find themselves misunderstood, isolated, and under-served by the community, government, and even by their own families,”Dr. Navarra observes.
“SLE is a worldwide disease particularly prevalent in Afro-Americans, Hispanics, and Asians, including Filipinos,” Dr. Navarra remarks. “Females are most frequently affected, outnumbering male patients 20:1. While it has been observed in all age groups, the disease is found most often in persons 20 to 35 years old. These are usually young women at the most productive years of their lives.”
Cecille Luna can relate. A graduate of Hotel and Restaurant Management, Cecille wanted to work in a cruise ship, just like her older brother and uncles. SLE threw a monkey wrench on her dream. Still, she maintains a positive attitude. “There is a time for everything,” she says. She copes by helping in a small family business.
Excessive exposure to the sun is known to make SLE worse in those with the disease. Fatigue can cause a flare-up or reactivation of the lupus. Insomnia can also result due to the medications. “It can happen that one can go without sleep for 24 hours or even for three days straight,” Cecille relates.
People with SLE are also likely to develop infections more easily. Some drugs used in the treatment of SLE also tend to lower one’s resistance to infection.
“Because Lupus assumes so many different forms, finding the right balance of treatment may take time,” notes Dr. Navarra. Unfortunately, many of the drugs used are nearly as toxic as the disease itself. The treatment options currently available are limited. The last time a treatment was approved by regulatory authorities for lupus was more than 50 years ago. So it was welcome news when HGS (Human Genome Sciences) and GSK (GlaxoSmithKline) made the announcement recently that Benlysta (belimumab) met its primary endpoint in the first of two pivotal Phase 3 trials in patients with serologically active SLE.
Dr. Navarra was one of the principal trial investigators for the experimental lupus drug Benlysta. She was a member of the steering committee for the BLISS-52 study, one of the largest clinical trials ever conducted in people with lupus, and was the lead author for the BLISS-52 manuscript. BLISS-52, the first of two double-blind, placebo-controlled phase 3 trials, involved a total of 867 participants at 90 clinical sites in 13 countries, primarily in Asia, South America, and Eastern Europe. The results show that Benlysta plus standard of care achieved a significantly greater patient response rate at week 52 than was achieved by standard of care alone. The results also show that Benlysta was generally well tolerated.
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For more information, visit lupus websites: www.lupus.ph and www.luisaproject.org.