| Care for the patient with lupus erythematosus is a challenge that draws on all the resources, knowledge, and strengths the health care team has to offer. Because of the unpredictable, highly individualized, and frequently changing nature of the disease as well as the intricacy of each patient's needs, it is impossible to predict the treatment for one patient from the outcome of treatment for another. Careful listening to the person's concerns; a cooperative, multidisciplinary approach; and a flexible plan of care will provide the patient with consistent, supportive care and the reassurance that her or his needs are being attended to. | |
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Lupus means "wolf." Erythematosus means "redness." In 1851, doctors coined this name for the disease because they thought the facial rash that frequently accompanies lupus looked like the bite of a wolf. Lupus can be categorized into three groups: discoid lupus erythematosus, systemic lupus erythematosus, and drug-induced systemic lupus erythematosus. Discoid lupus erythematosus (DLE) is characterized by a skin rash only. It occurs in about 20% of patients with systemic lupus erythematosus. The lesions are patchy, crusty, sharply defined skin plaques that may scar. These lesions are usually seen on the face or other sun-exposed areas. DLE may cause patchy, bald areas on the scalp and hypopigmentation or hyperpigmentation in older lesions. Biopsy of a lesion will usually confirm the diagnosis. Topical and intralesional corticosteroids are usually effective for localized lesions; antimalarial drugs may be needed for more generalized lesions. DLE only rarely progresses to systemic lupus erythematosus. |
| Systemic
lupus erythematosus (SLE, or lupus) is a chronic, inflammatory,
multisystem disorder of the immune system. Lupus: A Patient Care Guide
for Nurses and Other Health Professionals is concerned primarily with
this form of lupus. In SLE, the body develops antibodies that react against
the person's own normal tissue. This abnormal response leads to the many
manifestations of SLE and can be very damaging. The course is unpredictable
and individualized; no two patients are alike. Lupus is not contagious,
infectious, or malignant. It usually develops in young women of childbearing
years, but many men and children also develop lupus. African Americans and
Hispanics have a higher frequency of this disease than do Caucasians. SLE
also appears in the first-degree relatives of lupus patients more often
than it does in the general population, which indicates a strong hereditary
component. However, most cases of SLE occur sporadically, indicating that
both genetic and environmental factors play a role in the development of
the disease.
Lupus varies greatly in severity, from mild cases requiring minimal intervention to those in which significant and potentially fatal damage occurs to vital organs such as the lungs, heart, kidney, and brain. The disease is characterized by "flares" of activity interspersed with periods of improvement or remission. A flare, or exacerbation, is increased activity of the disease process with an increase in physical manifestations and/or abnormal laboratory test values. Periods of improvement may last weeks, months, or even years. The disease tends to remit over time. Some patients never develop severe complications, and the outlook is improving for those patients who do develop severe manifestations. Drug-induced SLE develops after the use of certain drugs and has symptoms similar to those of SLE. The characteristics of this syndrome are pleuropericardial inflammation, fever, rash, and arthritis. Serologic changes also occur. The clinical and serologic signs usually subside gradually after the offending drug is discontinued. A wide variety of drugs is implicated in this form of SLE. |
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Early symptoms of
SLE are usually vague, nonspecific, and easily confused with other pathological
and functional disorders. Symptoms may be transient or prolonged, and
individual symptoms often appear independently of the others. Moreover,
a patient may have severe symptoms with few abnormal laboratory test results,
and vice versa. A range of clinical symptoms
are seen in patients with lupus over the lifetime of the disease.
The onset of lupus may be acute, resembling an infectious process, or it may be a progression of vague symptoms over several years. As a result, diagnosing SLE is often a challenge. A consistent, thorough medical examination by a doctor familiar with lupus is essential to an accurate diagnosis. This must include a complete medical history and physical examination, laboratory tests, and a period of observation (possibly years). The doctor, nurse, or other health professional assessing a patient for lupus must keep an open mind about the varied and seemingly unrelated symptoms that the patient may describe. For example, a careful medical history may show that sun exposure, use of certain drugs, viral disease, stress, or pregnancy aggravates symptoms, providing a vital diagnostic clue. No single laboratory
test can definitely prove or disprove SLE. Initial screening includes
a complete blood count (CBC), liver and kidney screening panels, laboratory
tests for specific autoantibodies (e.g., antinuclear antibodies [ANA]),
a syphilis test (VDRL), urinalysis, blood chemistries, and erythrocyte
sedimentation rate (ESR). Abnormalities in these test results will guide
further evaluations. High-titer anti-nDNA antibody or anti-Sm antibody
are important indications of lupus. Specific immunologic studies, such
as those of complement components (e.g., C3 and C4) and other autoantibodies
(e.g., anti-La and anti-Ro), are used to help evaluate the patient's immune
status and to monitor the activity of the disease. At times, biopsies
of the skin or kidney using immunofluorescent staining techniques can
support a diagnosis of SLE (see Chapter 3, Laboratory
Tests Used to Diagnose and Evaluate SLE, for further information).
A variety of laboratory tests, X rays, and other diagnostic tools are
used to rule out other pathologic conditions and to determine the involvement
of specific organs. It is important to note, however, that any single
test may not be sensitive enough to reflect the intensity of the patient's
symptoms or the extent of the disease's manifestations. |
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Treatment
of SLE The treatment of
SLE is as varied as its course. Although there is no cure for lupus and
it is difficult to predict which treatment will be most effective for
each patient, there have been significant gains in treating patients,
and there is general consensus on several treatments. SLE management should
include as few medications for as short a time as possible. Some patients
never require medications, and others take them only as needed or for
short intervals, but many require constant therapy with variable doses.
Despite their usefulness, no drugs are without risks. Medications frequently
used to control the symptoms are nonsteroidal anti-inflammatory drugs
(NSAIDs), antimalarials, corticosteroids, and immunosuppressives. Other
medications may be necessary to control specific manifestations. Before
prescribing a medication, it is helpful to scrutinize a patient's past
response to treatments. A careful drug history should be taken; in particular,
hypersensitivities or allergies to certain drugs should be noted, as these
may aggravate the lupus. Patient and family education about medications
and their side effects is essential. Chapter 5,
Medications Used To Treat Lupus, presents more detailed information
on this issue, and Chapter 7, Patient Information,
includes relevant information for patients. For the lupus patient, the emotional aspects of dealing with a chronic disease can be overwhelming. They can also make a patient feel isolated from friends, family, and coworkers. Grief, depression, and anger are common reactions of patients about their lupus. Lupus patients and their families deal with the disease in strikingly different ways. Managing the ups and downs of the disease may put strains on relationships and marriages. Younger patients may fail to assert their independence or develop a life away from home if they feel they cannot cope with their disease on their own. Family members are often confused and frightened over the changes they see and need guidance and constructive suggestions on helping the patient. Children of lupus patients, particularly those too young to really understand the disease, may need special help in coping with their parent's illness. It is in these areas that the patient, family, and support systems need to be assessed, encouraged, and guided so that they work together as a team. Allowing the patient and her or his family time and freedom to move through different emotional phases without criticism and unrealistic expectations will facilitate acceptance of the disease. The health professional can have a major role in helping a patient adjust and can help with referrals to a social worker, counselor, or community resource, if needed. Chapter 6, Psychosocial Aspects of Lupus, discusses these issues in more detail. How lupus is defined, diagnosed, and treated and the psychosocial issues involved have implications for the way that the nurse or other health professional works with a patient who has lupus. For example, a newly diagnosed lupus patient needs help in getting current, accurate information about the disease and in defining realistic expectations and goals. The Patient Information Sheets in Chapter 7, can help. The health professional can clarify information with the patient's doctor, make rounds with the doctor, and act as a liaison between the patient and the doctor, if needed. Frequently, many doctors are involved in caring for a lupus patient at one time. This may increase the patient's confusion and leave gaps in information. Emotional support to the patient is essential. Being available for questions, providing reassurance, and encouraging discussion of fears and anxieties are all crucial roles that the nurse can play. The lupus patient hospitalized during a flare requires symptomatic nursing care. It is important to note that objective data, such as anemia or sedimentation rate, may not support subjective complaints of fatigue or pain. Careful head-to-toe assessment and documentation of all symptoms and complaints are important. Symptomatology changes constantly, so frequent reassessment is necessary. Reevaluations validate a patient's concerns and alert the doctor to changes that may be transient yet significant. The patient's tolerance for physical activity and need to control what she or he can do should be respected. The patient should be involved in developing a care plan and daily schedule of activities. The best way to treat lupus is to listen to the patient, whether that patient was diagnosed today or years ago. The patient's support systems can be expanded to include pamphlets and books, physical or occupational therapy, vocational rehabilitation, homemaker services, the Visiting Nurses Association (VNA), the Lupus Foundation of America (LFA), and the Arthritis Foundation (AF). Lupus is a challenge to everyone concerned. The health professional has a key role in its management. Accurate documentation, supportive care, emotional support, patient education, and access to community resources will provide the patient and her or his family with the tools they need to cope effectively. |
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Outline Credits Acknowledgments Introduction PDF Order Form Home 1. Erythematosus 2. Advances 3. Tests 4. Care 5. Medications 6. Psychosocial Aspects 7. Patient Info. 8. Resources |
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National Institute of Arthritis and
Musculoskeletal and Skin Diseases (NIAMS) January 26, 1999 |
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