problem facing lupus researchers is that their enemy poses an
array of symptoms with no one certain cause. Yet with a
correct diagnosis, strides are being made against the
debilitating conditions that arise.
general, lupus is a serious autoimmune disease for which there
is no cure, but treatment can be effective enough to allow
many sufferers to return to the routines of normal life.
problem lies in the immune system, whose job is to protect
against infection. When working properly, it recognizes the
difference between healthy and unhealthy cells. When it
malfunctions, however, and attacks healthy cells even when
there is no threat, the results are inflammation and
suffering from lupus may experience swelling and pain in the
joints (arthritis), fatigue, pain and skin rashes from
exposure to the sun. More severe symptoms include leg swelling
that can be a sign of kidney involvement, and in some cases a
person may experience a seizure or stroke.
frequently are diverse and affect the joints, skin, kidneys,
heart, lungs, nervous system, blood vessels and brain. The key
to proper diagnosis is the knowledge of the variable nature of
lupus. Dr. Jill Buyon, director of rheumatology and the Lupus
Center at the New York University School of Medicine, says
lupus may indeed represent many different diseases. Before it
comes to the attention of a rheumatologist, the specialist
most familiar with the disease, lupus can be mistaken for
other problems and misdiagnosed.
recommends that anyone with such symptoms first see a primary
good primary-care physician would think of lupus when a
patient arrives with a certain grouping of symptoms such as a
rash across the cheeks and swollen finger joints," Buyon
said, "but many PCPs (primary care physicians) aren’t
used to seeing the signs and symptoms that may change over
time." She said a thorough health history is vital to
sample can detect antinuclear antibodies (ANA), which are
proteins produced by a malfunctioning immune system. Up to 95
percent of lupus patients will have positive ANA tests, making
this an outstanding way to screen for the disease. As Buyon
points out, however, otherwise healthy individuals may test
positive, so other symptoms must be present to make a lupus
diagnosis. Often, patients are referred to a rheumatologist.
the ANA test, four out of 11 criteria cited by the American
College of Rheumatology must be present to confirm a lupus
diagnosis. They can be found at the Lupus Research Institute’s
site at .
times more women than men have lupus, according to the
American College of Rheumatology. It tends to begin to appear
when people are in their 20s or 30s and is more prevalent in
African-Americans and Asians than in Caucasians.
earlier a lupus diagnosis is made, the better the chance for
the disease to be controlled with medication, said Dr. Theresa
Lu, a pediatric rheumatologist who conducts lupus research at
the Hospital for Special Surgery in New York. Because lupus
symptoms vary from person to person, medication is
individualized, she added, and patients may be on medication
all lupus patients take antimalarial drugs, which often need
to be used in combination with steroids and other medications
to reduce the severity of the disease, according to Dr.
Rosalind Ramsey-Goldman, a rheumatologist and professor of
medicine at the Northwestern University Feinberg School of
Medicine in Chicago. "The goal of treatment is to reduce
disease activity, to get it under control and to prevent
flares or active manifestations of disease and to figure out
what amounts of which medications with the least amount of
toxicity are needed to do that," she said.
are what occur when symptoms of lupus are activated, sometimes
by environmental factors, but often the trigger is unknown.
They can happen at any time and can be set off by fatigue and
stress. About 60 percent of lupus patients flare because of
exposure to the sun, Ramsey-Goldman said. That sensitivity
results in skin rashes and feelings of weakness and illness.
surprisingly, people in warmer climates show more signs of
lupus. To guard against ultraviolet light from the sun,
Ramsey-Goldman recommends staying out of the sun, scheduling
outdoor activities before 10 a.m. or after 4 p.m., using
high-SPF sunscreen daily no matter what the weather and
reapplying it every couple of hours. She also advises wearing
hats, long sleeves and sunglasses
Hobbs, 65, a registered nurse in Carmel, N.Y., has lived with
lupus for 15 years. Her symptoms appeared when she awoke one
morning with swollen fingers. She thought she had touched
something and had had an allergic reaction. As a nurse,
however, she knew enough to consult her doctor. A
rheumatologist had her blood drawn, and a positive ANA test
along with other symptoms confirmed a lupus diagnosis.
beginning, doctors warned her about the sun, which she
realized caused pain to flare in her joints. They put her on
an antimalarial drug, but that gave her severe headaches, so
she began to take ibuprofen in the morning and evening
instead. For years, that controlled her symptoms. Recently,
though, lupus has caused inflammation in her liver, and she
has developed gallbladder problems.
Hobbs has learned to live with the disease. When she has
flare-ups, the joints in her hands hurt and she has difficulty
making a fist. When she’s exhausted, run down or stressed,
she also has flare-ups, but she continues to work. There are
many days when she forgets she has lupus, she said. "You
have to learn to live with it, or you become an invalid,"
take sensible precautions. She sees doctors who monitor her
closely on a regular schedule. She takes extra care during the
summer and has come to recognize the signs of an oncoming
flare. She crochets to keep her hands moving and walks as much
as possible. When she knows someone is sick, she won’t
visit, and she takes her trips to the supermarket early in the
morning when fewer people are out. Mostly she works with
hospice patients and takes every step possible to avoid
suggests that the best way to live with lupus is to have a
solid, open and honest rapport with your doctor. Knowing a
patient well enables a physician to see even the small changes
that serve as a guide for treatment. She urges patients to be
vigilant and informed and to get out and live their lives.