Diagnosing lupus can be
difficult. It may take months or even
years for doctors to piece together the
symptoms to diagnose this complex
disease accurately. Making a correct
diagnosis of lupus requires knowledge
and awareness on the part of the doctor
and good communication on the part of
the patient. Giving the doctor a
complete, accurate medical history (for
example, what health problems you have
had and for how long) is critical to the
process of diagnosis. This information,
along with a physical examination and
the results of laboratory tests, helps
the doctor consider other diseases that
may mimic lupus, or determine if the
patient truly has the disease. Reaching
a diagnosis may take time as new
symptoms appear.
No single test can
determine whether a person has lupus,
but several laboratory tests may help
the doctor to make a diagnosis. The most
useful tests identify certain
autoantibodies often present in the
blood of people with lupus. For example,
the antinuclear antibody (ANA) test is
commonly used to look for autoantibodies
that react against components of the
nucleus, or “command center,” of the
body’s cells. Most people with lupus
test positive for ANA; however, there
are a number of other causes of a
positive ANA besides lupus, including
infections, other autoimmune diseases,
and occasionally as a finding in healthy
people. The ANA test simply provides
another clue for the doctor to consider
in making a diagnosis. In addition,
there are blood tests for individual
types of autoantibodies that are more
specific to people with lupus, although
not all people with lupus test positive
for these and not all people with these
antibodies have lupus. These antibodies
include anti-DNA, anti-Sm, anti-RNP,
anti-Ro (SSA), and anti-La (SSB). The
doctor may use these antibody tests to
help make a diagnosis of lupus.
It may take months or even years for
doctors to piece together the symptoms
to accurately diagnose this complex
disease.
Some tests are used less
frequently but may be helpful if the
cause of a person's symptoms remains
unclear. The doctor may order a biopsy
of the skin or kidneys if those body
systems are affected. Some doctors may
order a test for anticardiolipin (or
antiphospholipid) antibody. The presence
of this antibody may indicate increased
risk for blood clotting and increased
risk for miscarriage in pregnant women
with lupus. Again, all these tests
merely serve as tools to give the doctor
clues and information in making a
diagnosis. The doctor will look at the
entire picture—medical history,
symptoms, and test results—to determine
if a person has lupus.
Other laboratory tests
are used to monitor the progress of the
disease once it has been diagnosed. A
complete blood count, urinalysis, blood
chemistries, and the erythrocyte
sedimentation rate (ESR) test can
provide valuable information. Another
common test measures the blood level of
a group of substances called complement.
People with lupus often have increased
ESRs and low complement levels,
especially during flares of the disease.
X rays and other imaging tests can help
doctors see the organs affected by SLE.
Diagnostic Tools for Lupus
- Medical history
- Complete physical
examination
- Laboratory tests:
- Complete
blood count (CBC)
- Erythrocyte
sedimentation rate (ESR)
- Urinalysis
- Blood
chemistries
- Complement
levels
- Antinuclear
antibody test (ANA)
- Other
autoantibody tests
(anti-DNA, anti-Sm,
anti-RNP, anti-Ro [SSA],
anti-La [SSB])
-
Anticardiolipin antibody
test
- Skin biopsy
- Kidney biopsy
Treating Lupus
Diagnosing and treating
lupus are often a team effort between
the patient and several types of health
care professionals. A person with lupus
can go to his or her family doctor or
internist, or can visit a
rheumatologist. A rheumatologist is a
doctor who specializes in rheumatic
diseases (arthritis and other
inflammatory disorders, often involving
the immune system). Clinical
immunologists (doctors specializing in
immune system disorders) may also treat
people with lupus. As treatment
progresses, other professionals often
help. These may include nurses,
psychologists, social workers,
nephrologists (doctors who treat kidney
disease), hematologists (doctors
specializing in blood disorders),
dermatologists (doctors who treat skin
disease), and neurologists (doctors
specializing in disorders of the nervous
system).
Treatment plans are tailored to the
individual's needs and may change over
time.
The range and
effectiveness of treatments for lupus
have increased dramatically, giving
doctors more choices in how to manage
the disease. It is important for the
patient to work closely with the doctor
and take an active role in managing the
disease. Once lupus has been diagnosed,
the doctor will develop a treatment plan
based on the patient’s age, sex, health,
symptoms, and lifestyle. Treatment plans
are tailored to the individual’s needs
and may change over time. In developing
a treatment plan, the doctor has several
goals: to prevent flares, to treat them
when they do occur, and to minimize
organ damage and complications. The
doctor and patient should reevaluate the
plan regularly to ensure it is as
effective as possible.
NSAIDs:
For people with joint or chest pain or
fever, drugs that decrease inflammation,
called nonsteroidal anti-inflammatory
drugs (NSAIDs), are often used. While
some NSAIDs, such as ibuprofen and
naproxen, are available over the
counter, a doctor’s prescription is
necessary for others. NSAIDs may be used
alone or in combination with other types
of drugs to control pain, swelling, and
fever. Even though some NSAIDs may be
purchased without a prescription, it is
important that they be taken under a
doctor’s direction. Common side effects
of NSAIDs can include stomach upset,
heartburn, diarrhea, and fluid
retention. Some people with lupus also
develop liver, kidney, or even
neurological complications, making it
especially important to stay in close
contact with the doctor while taking
these medications.
Antimalarials:
Antimalarials are another type of drug
commonly used to treat lupus. These
drugs were originally used to treat
malaria, but doctors have found that
they also are useful for lupus. A common
antimalarial used to treat lupus is
hydroxychloroquine (Plaquenil)*. It may
be used alone or in combination with
other drugs and generally is used to
treat fatigue, joint pain, skin rashes,
and inflammation of the lungs. Clinical
studies have found that continuous
treatment with antimalarials may prevent
flares from recurring. Side effects of
antimalarials can include stomach upset
and, extremely rarely, damage to the
retina of the eye.
* Brand
names included in this publication are
provided as examples only, and their
inclusion does not mean that these
products are endorsed by the National
Institutes of Health or any other
Government agency. Also, if a particular
brand name is not mentioned, this does
not mean or imply that the product is
unsatisfactory.
Corticosteroids:
The mainstay of lupus treatment involves
the use of corticosteroid hormones, such
as prednisone (Deltasone),
hydrocortisone, methylprednisolone
(Medrol), and dexamethasone (Decadron,
Hexadrol). Corticosteroids are related
to cortisol, which is a natural
anti-inflammatory hormone. They work by
rapidly suppressing inflammation.
Corticosteroids can be given by mouth,
in creams applied to the skin, or by
injection. Because they are potent
drugs, the doctor will seek the lowest
dose with the greatest benefit.
Short-term side effects of
corticosteroids include swelling,
increased appetite, and weight gain.
These side effects generally stop when
the drug is stopped. It is dangerous to
stop taking corticosteroids suddenly, so
it is very important that the doctor and
patient work together in changing the
corticosteroid dose. Sometimes doctors
give very large amounts of
corticosteroid by vein over a brief
period of time (days) ("bolus" or
"pulse" therapy). With this treatment,
the typical side effects are less likely
and slow withdrawal is unnecessary.
Long-term side effects
of corticosteroids can include stretch
marks on the skin, weakened or damaged
bones (osteoporosis and osteonecrosis),
high blood pressure, damage to the
arteries, high blood sugar (diabetes),
infections, and cataracts. Typically,
the higher the dose and the longer they
are taken, the greater the risk and
severity of side effects. Researchers
are working to develop ways to limit or
offset the use of corticosteroids. For
example, corticosteroids may be used in
combination with other, less potent
drugs, or the doctor may try to slowly
decrease the dose once the disease is
under control. People with lupus who are
using corticosteroids should talk to
their doctors about taking supplemental
calcium and vitamin D or other drugs to
reduce the risk of osteoporosis
(weakened, fragile bones).
It is dangerous to stop taking
corticosteroids suddenly, so it is very
important that the doctor and patient
work together in changing the dose.
Immunosuppressives: For some
patients whose kidneys or central
nervous systems are affected by lupus, a
type of drug called an immunosuppressive
may be used. Immunosuppressives, such as
cyclophosphamide (Cytoxan) and
mycophenolate mofetil (CellCept),
restrain the overactive immune system by
blocking the production of immune cells.
These drugs may be given by mouth or by
infusion (dripping the drug into the
vein through a small tube). Side effects
may include nausea, vomiting, hair loss,
bladder problems, decreased fertility,
and increased risk of cancer and
infection. The risk for side effects
increases with the length of treatment.
As with other treatments for lupus,
there is a risk of relapse after the
immunosuppressives have been stopped.
Other Therapies:
In some patients, methotrexate (Folex,
Mexate, Rheumatrex), a disease-modifying
antirheumatic drug, may be used to help
control the disease. Working closely
with the doctor helps ensure that
treatments for lupus are as successful
as possible. Because some treatments may
cause harmful side effects, it is
important to report any new symptoms to
the doctor promptly. It is also
important not to stop or change
treatments without talking to the doctor
first.
Alternative and
Complementary Therapies:
Because of the nature and cost of the
medications used to treat lupus and the
potential for serious side effects, many
patients seek other ways of treating the
disease. Some alternative approaches
people have tried include special diets,
nutritional supplements, fish oils,
ointments and creams, chiropractic
treatment, and homeopathy. Although
these methods may not be harmful in and
of themselves, and may be associated
with symptomatic or psychosocial
benefit, no research to date shows that
they affect the disease process or
prevent organ damage. Some alternative
or complementary approaches may help the
patient cope or reduce some of the
stress associated with living with a
chronic illness. If the doctor feels the
approach has value and will not be
harmful, it can be incorporated into the
patient's treatment plan. However, it is
important not to neglect regular health
care or treatment of serious symptoms.
An open dialogue between the patient and
physician about the relative values of
complementary and alternative therapies
allows the patient to make an informed
choice about treatment options.