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• 3. Tests
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• 6. Psychosocial Aspects
• 7. Patient Info.
• 8. Resources

Lupus Guide

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Publication Date: May 2001
Revised September 2006

Lupus: A Patient Care Guide for Nurses and Other Health Professionals
3rd Edition

Chapter 4: Care of the Lupus Patient

• General Manifestations of SLE
• Psychological Manifestations
• Dermatologic Manifestations
• Musculoskeletal Manifestations
• Hematologic Manifestations
• Cardiopulmonary Manifestations
• Renal Manifestations
• Central Nervous System Manifestations
• Gastrointestinal Manifestations
• Ophthalmologic Manifestations
• Pregnancy
• Infection
• Nutrition

Lupus symptoms tend to present themselves according to the body system affected. These symptoms vary over time in intensity and duration for each patient as well as from patient to patient. To care effectively for a lupus patient, the nurse or other health professional needs an up-to-date knowledge and understanding of the disease, its many manifestations, and its changing and often unpredictable course.

This chapter provides an overview of general and system-specific lupus manifestations and identifies potential problems. Suggested health care interventions for the nonhospitalized lupus patient are given. Many of these interventions can be modified for the hospitalized patient. The information and nursing interventions described in this chapter are not meant to be inclusive, but to provide the practitioner with guidelines for developing a care plan specific to the needs of each lupus patient.

As a care plan is developed, the health professional should keep in mind the importance of frequently reassessing the patient’s status over time and adjusting treatment to accommodate the variability of systemic lupus erythematosus (SLE) manifestations. An additional and very important element of working with the lupus patient is to incorporate the patient’s needs and routines in the plan of care. Adjusting nursing interventions and medical protocols to the patient’s needs not only recognizes the value of the patient as an authority on her or his own illness, but also can improve patient compliance and result in an improved quality of life.

Working together, the care provider and the patient have much to offer each other. The rewards for patients and families are tremendous, as patients become more independent and gain confidence in being able to care for themselves.

Systems Potentially Affected by Lupus

General Manifestations of SLE

Overview

Fatigue is a nearly universal complaint of patients with SLE even when no other manifestations of the disease are present. The cause of this debilitating fatigue is not known. The patient should be evaluated for factors that may exacerbate fatigue, such as hypothyroidism, adrenal dysfunction, overexertion, insomnia, depression, stress, anemia, and other inflammatory diseases. Fatigue in SLE patients may be lessened by adequate rest, healthful diet, exercise, and attention to psychosocial factors. One common cause of fatigue in SLE patients is fibromyalgia.

Many patients with SLE experience changes in weight. At least one-half of patients report weight loss before being diagnosed with SLE. Weight loss in SLE patients may be attributed to a decreased appetite, side effects of medications, GI problems, or fever. Weight gain can occur in some patients and may be due in part to prescribed medications, especially corticosteroids, or fluid retention from kidney disease.

Episodic fever is experienced by more than 80 percent of SLE patients, and there is no particular fever pattern. Although high fevers can occur during a lupus flare, low-grade fevers are more frequently seen.

A complicating infection is often the cause of an elevated temperature in a patient with SLE. The patient’s WBC count may be normal to elevated with an infection, but low with SLE alone. However, certain medications, such as immunosuppressives, will suppress the WBC count even in the presence of fever. Therefore, it is important to rule out other causes of a fever, including an infection or a drug reaction. Urinary and respiratory infections are common in SLE patients.

Some patients with SLE experience racing of the heart, or tachycardia. This rapid pulse is frequently the result of inflamed heart tissue. However, tachycardia may have other causes as well, such as an infection.

Potential Physiological Manifestations

• fatigue
• weight gain or loss
• fever (increased temperature over normal baseline)
• tachycardia

Psychological Manifestations

People with lupus often experience psychological and emotional effects, such as grief, depression, and anger. These effects can be related to outward changes, such as skin alterations caused by the disease. They can also be related to concerns about the future, and about other aspects of the disease and its treatment. It is important for health professionals to be alert to potential psychological repercussions and to assist in alleviating them.

Potential Psychological Manifestations

• depression: lowered selfesteem; negative feelings about body; feelings of decreased confidence and self-worth; feelings of sadness, hopelessness and helplessness; crying
• difficulty in completing self-care activities, caring for children, maintaining a household, and other activities of daily living
• inability to maintain full- or part-time employment
• decreased social activities
• lack of energy or ambition
• irritability
• impaired concentration
• insomnia
• suicidal thoughts

Potential Problems

1. inability to complete activities of daily living because of fatigue, weakness, and psychological difficulties
2. changes in weight
3. fever

Nursing Interventions

Objective: Minimize fatigue.

1. Assess the patient’s general fatigue level.
2. Assess for the presence of depression, anxiety, and other stressors.
3. Conduct an assessment to determine the patient’s daily activities that contribute to fatigue.
4. Help the patient to develop an energy-conserving plan for completing daily and other activities and work. Many people with lupus need to take a daily nap.
5. Encourage the patient to get 8 to 10 hours of sleep at night.
6. Encourage exercise as tolerated.

Objective: Maintain weight at optimal range.

1. Assess the patient’s prescription and nonprescription drug regimen and dosages.
2. Assess the patient’s usual daily dietary intake by asking her or him to keep a food diary.
3. Develop a dietary plan with the patient that encourages healthful eating. If the patient has nutrition-related lupus complications, refer her or him to a registered dietitian for specialized counseling.
4. Encourage exercise as tolerated.
5. Record the patient’s weight at each visit.
6. Instruct the patient to weigh herself or himself at home once a week and record it.

Objective: Teach the patient to recognize fever and signs and symptoms of infection.

1. Assess the patient’s prescription and nonprescription drug regimen and dosages.
2. Monitor the patient’s WBC count.
3. Teach the patient to monitor temperature during a lupus flare.
4. Teach the patient to look for signs and symptoms of infection, particularly urinary and respiratory infections. (Note: The cardinal signs of infection may be masked because of corticosteroids and antipyretic medications.)
5. Instruct the patient to call a physician if signs and symptoms of an infection appear or if a fever is elevated above 101°F.

Objective: Assist the patient in adjusting to physical and lifestyle changes.

1. Allow the patient to express feelings and needs.
2. Assess the patient’s usual coping mechanisms.
3. Acknowledge that feelings of denial and anger are normal.
4. Explore with the patient sources of potential support and community resources.
5. Explore possible ways of concealing skin lesions and hair loss.
6. Encourage the patient to discuss interpersonal and social conflicts that arise.
7. Encourage the patient to accept help from others, such as counseling or a support group.

Objective: Recognize the signs and symptoms of depression and initiate a plan of care.

1. Assess the patient for the major signs and symptoms of depression.
2. Assess the patient’s interpersonal and social support systems.
3. Encourage the patient to express feelings.
4. Initiate a referral to a mental health counselor or psychiatrist.

For further information and nursing interventions, see the section on infection in this chapter. Also see the Patient Information Sheets in Chapter 7 on Living With Lupus, Preventing Fatigue Due to Lupus, Skin Care and Lupus, and Fever and Lupus.

Dermatologic Manifestations

Overview

Approximately 80 percent of patients with systemic lupus erythematosus have skin manifestations and may suffer from disfigurement. The classic sign of SLE is the “butterfly” rash extending over the cheeks (malar area) and bridge of the nose. This rash ranges from erythema to a severe eruption with scaling. It is photosensitive, and it may last several days or be fixed. Between 55 and 85 percent of patients develop this rash at some time in the course of the disease.

The most prevalent and severe form of cutaneous lupus, which affects primarily the skin, is called chronic cutaneous lupus. It is commonly known as discoid lupus, but has other forms as well (see below). Discoid lupus erythematosus (DLE) occurs in about 20 percent of patients with SLE. The lesions are patchy, crusty, coin-shaped, 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 often not effective, even for localized lesions. Antimalarial drugs may be needed for some local lesions and for more generalized lesions. DLE progresses to SLE in about 5 percent of cases.

Other forms of chronic cutaneous lupus include:

• Hypertrophic or verrucous DLE is characterized by either thickened lesions (hypertrophic) or wart-like lesions (verrucous).
• Lupus profundus is characterized by firm lumps in the fatty tissue underlying the skin.
• Mucosal DLE is characterized by lesions that occur in the mucus membranes of the mouth and nose.
• Palmar-plantar DLE is characterized by lesions that occur in the hands and feet.

Another form of cutaneous lupus, subacute cutaneous LE is seen in about 10 percent of SLE patients. It produces highly photosensitive papules or cyclic lesions. Skin changes, especially the butterfly rash and the effects of subacute cutaneous LE, can be precipitated by sunlight.

Some patients may develop mouth, vaginal, or nasal ulcers. Hair loss (alopecia) occurs in about one-half of SLE patients. Most hair loss is diffuse, but it may be patchy. It can be scarring or nonscarring. Alopecia may also be caused by corticosteroids, infection, or immunosuppressive drugs.

Raynaud’s phenomenon (episodic blanching of the fingers and toes due to paroxysmal vasospasm) frequently occurs in patients with SLE. For most patients, Raynaud’s phenomenon is mild. However, some SLE patients with severe Raynaud’s phenomenon may develop painful skin ulcers or gangrene on the fingers or toes. Attacks of Raynaud’s phenomenon can cause a deep tingling feeling in the hands and feet that can be very uncomfortable.

Skin alterations in the lupus patient, particularly those of DLE, can be disfiguring. As a result, patients may experience fear of rejection by others, negative feelings about their body, and depression. Changes in lifestyle and social involvement may occur.

Potential Dermatologic Manifestations

• butterfly rash on cheeks and bridge of nose
• scaly, disk-shaped scarring rash (DLE)
• erythematous, slightly scaly papules (subacute cutaneous LE)
• psoriasiform or arcuate (curved) lesions on the trunk of the body (subacute cutaneous LE)
• ulcers in the mouth, vagina, or nasal septum
• atrophy (including striae or stretch marks from corticosteroids)
• impaired wound healing
• easy bruising
• petechiae
• increased body hair (hirsutism) from corticosteroids
• steroid-induced ecchymosis
• ulcers or gangrene on fingers or toes
• alopecia
• redness in the nail bed (periungual erythema)
• a reddish or cyanotic pattern seen on arms, legs, or torso, especially in cold weather (livedo reticularis)

Potential Problems

1. alteration in skin integrity
2. alopecia
3. discomfort (pain, itching)
4. alteration in body image
5. depression

Nursing Interventions

Objective: Minimize appearance of lesions.

1. Document the appearance and duration of lesions and rashes.
2. Teach the patient to minimize direct exposure to UV rays from sun and from fluorescent and halogen light bulbs. (Glass does not provide complete protection from UV rays.)
3. Instruct the patient to use a sunscreen with an SPF of 15 or greater and wear protective clothing. Patients who are allergic to PABA will need to find a PABA-free sunscreen.
4. Provide information on hypoallergenic concealing makeup.
5. Instruct the patient to avoid topical applications, such as hair dyes and skin creams, and the use of certain drugs that may make her or him more sensitive to the sun.

Objective: Alleviate discomfort.

1. For patients with mouth lesions, suggest a soft-food diet, lip balms, and warm saline rinses.
2. Ask the physician to consider prescribing Kenalog® in Orabase®, which is applied twice a day to oral ulcers.
3. Suggested self-help measures for patients with Raynaud’s phenomenon include:
• keep warm, particularly in cold weather; use chemical warmers, gloves, socks, hats; avoid air conditioning; use insulated drinking glasses for cold drinks; wear gloves when handling frozen or refrigerated foods
• quit smoking
• control stress
• exercise as tolerated.

Objective: Help patients to cope with potential psychological manifestations.

1. See the nursing interventions dealing with psychological issues under manifestations.

Musculoskeletal Manifestations

Overview

Arthralgia or arthritis is experienced by 95 percent of SLE patients at some time during the course of the disease. Articular pain is the initial symptom in about one-half of patients eventually diagnosed with SLE. Morning stiffness and joint and muscle aching can also occur. Joint pain may be migratory; it is typically symmetric but is asymmetric in many patients. Joints may become warm and swollen. X rays of the joints usually do not show erosion or destruction of bone.

Proliferation of the synovium in lupus is more limited than in rheumatoid arthritis, and joint destruction is rare. The joints most commonly involved are those of the fingers, wrists, and knees; less commonly involved are the elbows, ankles, and shoulders.

Several joint complications may occur in SLE patients, including reducible deformities such as Jaccoud’s arthropathy and osteonecrosis. In SLE patients, osteonecrosis may develop as a steroid complication, which causes bone death in the hips or other joints. Subcutaneous nodules are rarely seen. Tendinitis and carpal tunnel syndrome are seen occasionally. Tendon rupture is very rare.

Potential Musculoskeletal Manifestations

• morning stiffness and aching
• joint pain
• warm, swollen joints
• rarely, ulnar deviation of the fingers with swan neck deformities and subluxations

Generalized myalgia and muscle tenderness, especially over the shoulders, is more likely to be fibromyalgia than lupus.

Potential Problems

1. pain
2. alteration in joint function

Nursing Interventions

Objective: Minimize pain from joint and muscle complications.

1. Assess and document joint complaints and appearance. Changes may be transient.
2. Assess the patient’s selfmanagement techniques for controlling pain.
3. Teach the patient to apply heat or cold as appropriate.
4. Instruct the patient in use of prescription and nonprescription pain medications.
5. Teach the patient to apply splints or braces, if ordered by physician.

Objective: Maintain joint function and increase muscle strength.

1. Suggest warm showers or baths to lessen stiffness and pain.
2. If indicated, refer patients with acutely inflamed joints to a physical therapist for passive range-of-motion (ROM) exercises. The physical therapist may train a family member to assist the patient with ROM exercises at home.
3. Teach the patient that an inflamed joint should not bear weight and suggest that the patient avoid strenuous activity.
4. If needed, assist the patient in obtaining crutches, a walker, or a cane.

Hematologic Manifestations

Overview

Abnormal blood conditions are common in patients with SLE. Problems include anemia, leukopenia, thrombocytopenia, and other clotting disorders.

Anemia, which is common in SLE patients, reflects insufficient bone marrow activity, shortened red blood cell (RBC) life span, or poor iron uptake. Aspirin, NSAIDs, and prednisone can cause stomach bleeding and exacerbate the condition. Iron deficiency is treated by iron supplementation. Immune-mediated anemia (or hemolytic anemia), which is due to antibodies directed at RBCs, is treated with corticosteroids.

Leukopenia, which is also relatively common in SLE patients, may be more severe with flares of the disease or with the use of immunosuppressive drugs. In severe cases, low WBC counts can increase the risk of infections.

Thrombocytopenia may occur and—if it is mild—may respond to lowdose corticosteroids. Mild forms may not need to be treated, but a severe form requires high-dose corticosteroid or cytotoxic drugs. The major clinical features of antiphospholipid antibodies (APLs) and antiphospholipid syndrome are venous thrombosis, arterial thrombosis, pregnancy loss or thrombocytopenia with a history of positive anticardiolipin antibody, anti-ß2 glycoprotein I, or lupus anticoagulant tests.

Abnormal laboratory tests may include a false-positive VDRL test for syphilis. Fluorescent treponemal antibody absorption (FTA-ABS) and microhemagglutination-Treponema pallidum (MHA-TP) tests, which are more specific tests for syphilis, are almost always negative if the patient does not have syphilis. An elevated erythrocyte sedimentation rate (ESR) is a common finding in SLE, but it does not mirror disease activity.

Potential Hematologic Manifestations

Anemia

• decreased hemoglobin and hematocrit values
• positive Coombs’ test (hemolytic anemia)
• dizziness
• sensitivity to cold
• chronic fatigue, lethargy, and malaise
• pallor
• weakness
• dyspnea on exertion
• headache

Leukopenia

• increased risk of infection
• usually not associated with symptoms

Thrombocytopenia

• petechiae
• excessive bruising of skin
• bleeding from gums, nose
• blood in stool

Potential Problems

1. inability to complete activities of daily living because of fatigue and weakness
2. anemia
3. potential for hemorrhage
4. potential to develop venous or arterial thromboses
5. increased risk of infection

Nursing Interventions

Objective: Minimize fatigue.

• Refer to the nursing interventions.

Objective: Recognize anemia and develop a plan of care.

1. Monitor the patient for signs and symptoms of anemia and for altered laboratory values.
2. Develop a plan with the patient to conserve energy.
3. Teach the patient the basics of good nutrition.
4. Instruct the patient to take iron preparation medications as prescribed.

Objective: Minimize episodes of bleeding.

1. Assess the patient for signs and symptoms of bleeding, such as petechiae, bruises, GI bleeding, blood in urine, ecchymoses, nose bleeds, bleeding from the gums, heavy menses, and bleeding between menstrual periods.
2. Teach the patient why she or he is at risk of bleeding (low platelet count, anemia, thrombocytopenia) and to report episodes to physician.
3. Encourage the patient to wear a medical alert bracelet or carry a card.
4. Teach the patient measures to prevent bleeding, such as use of a soft toothbrush or an electric shaver.

Objective: Decrease risk of infection.

• See the nursing interventions for infection.

Note: For more information, see Laboratory Tests Used to Diagnose and Evaluate SLE (Chapter 3) and the Patient Information Sheet in Chapter 7 on Preventing Fatigue Due to Lupus.

Cardiopulmonary Manifestations

Overview

Cardiac abnormalities contribute significantly to morbidity and mortality in SLE and are among the most important clinical manifestations of the disease. In addition, involvement of the lungs and pleurae is common. Pericarditis, an inflammation of the pericardium, is the most common cardiac abnormality in SLE. Myocarditis, an inflammation of the heart muscle, may also occur, but is rare. Myocardial infarction, caused by atherosclerosis, is increased in SLE patients, even below the age of 35 years.

Pleuritic chest pain is common. Pleurisy is the most common respiratory manifestation in SLE. Attacks of pleuritic pain can also be associated with pleural effusions. Many patients complain of chest pain, but pericardial changes are not often demonstrated on clinical evaluation.

Potential Cardiopulmonary Manifestations

Pericarditis

• pain in the anterior chest, neck, back, or arms that is often relieved by sitting up
• shortness of breath
• swelling of legs and feet
• audible pericardial friction rub

Myocarditis

• shortness of breath
• fatigue
• palpitations

Atherosclerosis Leading to Myocardial Infarction

Warning signs of myocardial infarction include:

• burning, choking, squeezing, or pressing chest pain that may radiate to left shoulder and arm
• shortness of breath
• weakness
• unrelieved indigestion
• nausea and vomiting

Pleurisy

• shortness of breath
• chest pain, especially with deep inspiration

Leukocytoclastic Vasculitis

• necrotic ulcerations, including raised hemorrhagic nodules (papule, purpura) that ulcerate, especially on the lower legs, ankles, and dorsa of the feet

Valvular Heart Disease (Libman-Sacks Lesions)

• lesions that may result in cardiac murmurs and valve dysfunction; associated with APLs

Venous Thrombosis

• positive Homans’ sign (pain associated with forced dorsiflexion of the ankle)
• pain, swelling, inflammation, redness, and warmth in the affected limb
• increased circumference of affected limb

Arterial Thrombosis

• pain or loss of sensation due to ischemia in an extremity
• paresthesias and loss of position sense
• coldness
• pallor
• paralysis, loss of speech
• no pulse in the extremity

Potential Problems

1. alterations in cardiac function
2. potential for impaired gas exchange and ineffective breathing patterns
3. alteration in tissue perfusion

Nursing Interventions

Objective: Detect changes in cardiac function.

1. Assess the patient for signs and symptoms of potential cardiac problems.
2. Teach the patient signs and symptoms of cardiac problems, including warning signs of a heart attack; reinforce the importance of reporting them to the physician.
3. Educate the patient about medications.
4. Educate the patient about a healthful diet and regular exercise as tolerated.

Objective: Maintain adequate gas exchange and effective breathing patterns.

1. Assess quality and depth of respirations; auscultate breath sounds.
2. Suggest measures to relieve pain, such as relaxation techniques, biofeedback, rest, and pain medications as ordered.
3. Encourage patients who smoke to quit.

Objective: Ensure adequate tissue perfusion.

1. Assess skin color and temperature; check for lesions.
2. Check capillary refill in the nailbeds.
3. Assess for presence of edema and pain in the extremities.
4. Stress the importance of not smoking.
5. Teach the patient the basics of good foot care.
6. Teach the patient to avoid cold temperatures and to keep the hands and feet warm, especially in winter months.
7. Teach the patient the signs and symptoms of vascular impairment that need to be reported to the physician, including a change in skin color or sensation or appearance of lesions.

Objective: Recognize the signs and symptoms of thromboses; refer for immediate medical attention.

1. Teach the patient the signs and symptoms of potential venous or arterial thrombosis and reinforce the need to contact a physician immediately.

Note: For additional information, see the Patient Information Sheet in Chapter 7 on Serious Conditions Associated With Lupus.

Renal Manifestations

Overview

Renal damage is one of the most serious complications of SLE. The majority of people with lupus have some degree of asymptomatic microscopic kidney damage. Fifty percent have clinical renal disease. Kidney damage may necessitate treatment with corticosteroids, cytotoxic agents, dialysis, or renal transplantation.

Renal biopsy can be helpful in making decisions about drug treatments and determining prognosis by assessing the presence of active renal disease versus scarring.

Potential Renal Manifestations

SLE Nephropathy Signs and Symptoms:

• hematuria (as few as 5 RBCs is significant)
• proteinuria (>1+)
• sterile pyuria
• elevated creatinine level (indicates loss of renal function)
• elevated blood urea nitrogen (BUN)
• weight gain
• ankle edema
• hypertension

Signs and Symptoms Suggesting Renal Failure

• nausea and vomiting
• anorexia
• anemia
• lethargy
• pruritus
• changing level of consciousness

Fluid and Electrolyte Imbalance (Excess Extracellular Fluid Volume)

• weight gain
• pitting edema of the lower extremities
• sacral edema
• bounding pulse, elevated blood pressure, S3 gallop
• engorgement of neck and hand veins
• dyspnea
• crackles in lungs
• cyanosis
• decreased hematocrit
• urine specific gravity <1.010
• variable serum sodium level (normal, high, or low), depending on the amount of sodium retention or water retention
• serum osmolality <275 mOsm/kg

Potential Problems

1. impaired renal function
2. fluid and electrolyte imbalance

Nursing Interventions

Objective: Promptly recognize renal involvement and prevent complications.

1. Document any patient complaints or assessment findings that may indicate renal involvement.
2. Teach the patient to watch for signs and symptoms of renal complications and report them promptly to the physician: facial swelling, peripheral edema, “foamy” urine (proteinuria), “coke-colored” urine (hematuria), or nocturia and urinary frequency.
3. Assess the patient for early signs of heart failure.
4. Refer the patient to a dietitian for counseling on dietary changes to accommodate alterations in renal status.
5. Teach the patient to take prescribed medications as ordered.
6. Stress the importance of referral and followup care with nephrologist if necessary.

Objective: Decrease fluid retention and edema.

1. Monitor electrolyte values.
2. Assess breath sounds and instruct the patient to report shortness of breath or dyspnea.
3. Teach the patient to maintain balanced fluid intake and output.
4. Monitor the patient for signs and symptoms of extracellular fluid overload.
5. Instruct the patient to weigh herself or himself daily to monitor fluid retention.
6. Monitor the patient’s blood pressure and teach the patient how to monitor it at home.

Objective: Minimize risk of infection.

1. Teach the patient to watch for the signs and symptoms of urinary tract infection and to report them to the physician.
2. Instruct the patient that corticosteroid therapy may mask the usual symptoms of infection and that she or he may have an altered immune response because of medications used to control SLE.
3. Teach the patient to take antibiotics for urinary tract infection as prescribed.

Note: For additional information, see the Patient Information Sheet in Chapter 7 on Serious Conditions Associated With Lupus.

Central Nervous System Manifestations

Overview

Neurologic manifestations of SLE are common and vary from mild to severe. They can be difficult to diagnose and distinguish from other diseases. All portions of the nervous system may be affected, including the CNS. Definite diagnosis of CNS lupus may be difficult, as symptoms may be related to medications, other medical conditions, or individual reactions to chronic illness.

Examples of neurological manifestations include cranial or peripheral neuropathy, psychosis, coma, transverse myelitis, meningitis, cognitive impairment, mental changes, seizures, and stroke.

Cranial or peripheral neuropathy occurs in 10 to 15 percent of patients; it is probably secondary to vasculitis in small arteries supplying nerves. Cerebrovascular accidents (strokes) are reported in approximately 15 percent of patients. Between 10 and 20 percent of patients experience seizures. Although cognitive impairment is believed to be very common, formal cognitive function testing may be required in order to document it.

Serious CNS involvement ranks behind only kidney disease and infection as a leading cause of death in lupus. However, the majority of SLE patients with CNS complications do not develop a life-threatening disease.

Potential CNS Manifestations

General CNS lupus

• headaches¹
• confusion
• seizures
• psychosis
• numbness
• paralysis
• coma
• aphasia

Cranial neuropathies

• visual defects
• blindness
• nystagmus (involuntary movement of the eyeball)
• ptosis (paralytic drooping of the eyelid)
• papilledema (edema in the optic disk)
• tinnitus
• vertigo
• facial palsy

Spine

• transverse myelitis

Cognitive impairment

• confusion
• impaired long- and short-term memory
• difficulty in conceptualizing, abstracting, generalizing, organizing, and planning information for problem solving
• difficulties in personal orientation and in dealing with the larger world
• selective attention
• difficulties in pattern recognition, sound discrimination and analysis, and visual-motor integration

Mental changes

• depression
• anxiety
• affective disorder
• mood swings
• hypomania or mania (especially with corticosteroid use)

Rare CNS manifestations

• myelitis
• movement disorder

¹ Although headaches are not usually due directly to lupus, an unusual, new, severe headache requires evaluation.

Potential Problems

1. alteration in mental status, cognition, and perception
2. altered ability to perform activities of daily living and meet family responsibilities
3. potential for injury

Nursing Interventions

Objective: Develop a plan for the patient to perform activities of daily living appropriately and independently.

1. Assess and document the patient’s mental status to determine her or his capabilities:
• general appearance
• unusual body movements
• speech patterns and word use
• alertness and orientation to time, place, and person
• memory of remote and recent past
• perception of self and environment
• affect and emotional stability
• ability to solve problems
• presence of depression.
2. Support the patient’s need to maintain some control over daily activities and decisions:
• Encourage the patient to plan and participate in daily routines.
• Set aside time to develop trust and rapport with the patient, and be consistently truthful (patients are keenly aware of inconsistencies in information provided).
3. Encourage the patient to discuss the effects of SLE on her or his personal life and coping methods. Allow expressions of fear and anger.

Objective: Assist the patient in identifying family and community support services.

1. Assess the patient’s support network. Discuss alternatives for strengthening supports.
2. Anticipate family concerns. Seek out family members to answer their questions and to provide support. Include significant others in patient care as appropriate.
3. Help the family identify potential coping skills, environmental supports, and community services for dealing with chronically ill people.
4. Encourage patient and family members to consider professional counseling.

Objective: Minimize potential for injury.

1. Assist the patient and family in identifying and removing potentially dangerous items in the environment.
2. Involve family members in planning the patient’s care and safety measures.
3. Assess the patient’s ability to safely administer her or his own medications.

Note: For additional information, see the Patient Information Sheets in Chapter 7 on Living With Lupus and Serious Conditions Associated With Lupus.

Gastrointestinal Manifestations

Overview

Gastrointestinal (GI) problems are common and range from vague complaints of anorexia to life-threatening bowel perforation secondary to mesenteric arteritis. Anorexia, nausea, vomiting, and diarrhea may be related to the use of salicylates, NSAIDs, antimalarials, corticosteroids, and cytotoxic drugs.

SLE patients who present with acute abdominal pain, esophageal dysmotility, and tenderness need immediate, aggressive, and comprehensive evaluation to rule out an intra-abdominal crisis. Ascites, an abnormal accumulation of fluid in the peritoneal cavity, is rare. Pancreatitis is a serious complication occurring in approximately 5 percent of SLE patients and is usually secondary to vasculitis.

Mesenteric or intestinal vasculitis is a life-threatening condition that may have complications of obstruction, perforation, or infarction. It is rare. Abnormal liver enzyme levels are also found in about one-third of SLE patients, and can be from lupus, infection, or medication.

Potential GI Manifestations

General manifestations

• dry mouth (characteristic of patients with coexisting Sjögren’s syndrome)
• anorexia
• nausea and vomiting
• diarrhea
• dysphagia (especially in association with Raynaud’s phenomenon)

Pancreatitis

• mild nonspecific abdominal pain to severe epigastric pain radiating to the back
• nausea
• vomiting
• elevated serum amylase level
• dehydration

Ascites

• abdominal distention
• bulging flanks
• downward protruding umbilicus

Mesenteric and intestinal vasculitis

• cramping or constant abdominal pain
• vomiting
• fever
• diffuse direct and rebound abdominal tenderness

Nutritional Deficiencies

• See pages 49–50 for signs and symptoms of nutritional deficiencies.

Potential Problems

1. alteration in GI function related to drug therapy or disease process
2. nutritional deficiencies

Nursing Interventions

Objective: Minimize GI side effects caused by medications.

1. See Chapter 5, Medications Used to Treat Lupus and the Patient Information Sheets in Chapter 7 on Nonsteroidal Anti-Inflammatory Drugs, Antimalarials, Corticosteroids, Azathioprine, Cyclophosphamide, Methotrexate, Cyclosporine, Mycophenolate Mofetil, and Intravenous Immunoglobulins.

Objective: Minimize complications from GI manifestations.

1. Assess the patient for GI problems at each visit.
2. Monitor laboratory results.
3. Suggest measures that may increase comfort, such as throat lozenges, saline rinses, or small, frequent meals.
4. Instruct the patient to report immediately any sudden or severe abdominal pain, shortness of breath, or epigastric pain to physician.
5. Refer the patient to dietitian.

Objective: Maintain nutritional status.

1. See the nursing interventions under the nutrition section of this chapter and the Patient Information Sheet in Chapter 7 on Nutrition and Lupus.

Ophthalmologic Manifestations

Overview

Eye disease occurs in approximately 20 percent of patients with SLE. In some cases, eye problems are related to the inflammatory process of lupus itself. In other cases problems may be due to drug treatment (corticosteroids or antimalarials) or may be a separate problem (glaucoma or retinal detachment). Blindness due to SLE occurs, but is rare.

The following eye problems occur in lupus:

• A lupus rash may develop on the eyelids.
• Kerato-conjunctivitis is “dry eye” related to Sjögren’s syndrome. Some people with lupus have Sjögren’s syndrome, which is an autoimmune condition that causes excessive dryness of the mucous membranes. People with lupus who have these symptoms require artificial tears to relieve dry eyes.
• Uveitis (inflammation of the iris, ciliary body, vitreous gel and/or choroid) and scleritis may be part of the systemic inflammatory process of the disease.
• Cytoid bodies are the most common retinal change in SLE. They reflect microangiopathy of the retinal capillaries and localized microinfarction of the superficial nerve fiber layers of the retina.
• Glaucoma and cataracts may be caused by corticosteroids.
• Antimalarials can damage the retina, which can impair vision (particularly color vision) or, extremely rarely, cause blindness. The risk of retinopathy is as low as 1 in 5,000.

Potential Opthalmologic Manifestations

• a lupus rash on the eyelids
• red eyes
• loss of tears, dry eyes
• mucus discharge from eyes, particularly upon awakening
• sensitivity to light
• change in vision
• blurred vision
• cloudy lens(es)
• burning sensation in eyes

Potential Problems

1. discomfort
2. visual impairment
3. potential for injury
4. difficulty carrying out activities of daily living

Nursing Interventions

Objective: Minimize discomfort.

1. Allow time for the patient to express concerns and ask questions.
2. Teach the patient how to apply artificial tears for dry eyes to increase comfort and prevent corneal abrasion.
3. Teach the patient the correct way to take prescribed medications, such as eye drops for glaucoma.

Objective: Minimize potential for serious visual impairment or blindness.

1. Assess the patient’s vision changes and impairments.
2. Reinforce the need to follow up with an ophthalmologist.

Objective: Develop a plan for patient to perform activities of daily living appropriately and independently.

1. Provide referrals to support groups and services for the visually impaired.
2. Refer to the CNS lupus nursing interventions for additional suggestions.

Objective: Minimize potential for injury.

1. See the CNS lupus nursing interventions for suggestions.

Note: For additional information, see the Patient Information Sheets in Chapter 7 on Living With Lupus and Serious Conditions Associated With Lupus.

Pregnancy

Overview

Twenty-five years ago, women with lupus were counseled not to become pregnant because of the risk of a flare of the disease and an increased risk of miscarriage. Research and careful treatment have made it possible for more and more women with lupus to have successful pregnancies. Although a lupus pregnancy is still considered high risk, most women with lupus are able to carry their babies safely to term. Experts disagree on the exact numbers, but approximately 10 percent of lupus pregnancies end in miscarriage. Pregnancy counseling and planning before pregnancy are important. Optimally, a woman should have no signs or symptoms of lupus before she becomes pregnant.

Researchers have identified two closely related lupus autoantibodies, anticardiolipin antibody and lupus anticoagulant, that are associated with risk of miscarriage. One-third to onehalf of women with lupus have these autoantibodies, which can be detected by blood tests. Identifying women with the autoantibodies early in the pregnancy may help physicians take steps to reduce the risk of miscarriage. Pregnant women who test positive for these autoantibodies and who have had previous miscarriages are generally treated with baby aspirin and heparin throughout their pregnancy.

While it used to be said that flares, if they occurred, were more frequent postpartum, they can in fact occur during any trimester as well. Some women may experience a mild to moderate flare during or after their pregnancy; others may not. Pregnant women with lupus, especially those taking corticosteroids, are also likely to develop pregnancy-induced hypertension, diabetes, hyperglycemia, and kidney complications. About 25 percent of babies of women with lupus are born prematurely, but do not suffer from birth defects. If a patient has not been on glucocorticoids during pregnancy, there is no reason to initiate these medications to prevent a postpartum flare.

In rare cases, babies may be born with a condition called neonatal lupus. This condition causes the fetus or neonate to develop problems in the heart, skin, liver, and/or blood. Neonatal lupus is not the same as SLE. It is associated with maternal antibodies called anti-Ro(SSA) and anti-La(SSB). Neonatal lupus can be identified in utero between 18 and 24 weeks. The most common manifestations are heart block (heart beats abnormally slowly) or a rash, most often seen around the eyes.

• The heart block is almost always permanent, and most children will need pacemakers for life.
• The skin rash can appear at birth, but most commonly presents at about 6 weeks after birth. This condition is transient and disappears by about 8 months.
• The liver and blood problems are also transient.

The risks of having a child with heart block for a mother with anti-Ro(SSA) and anti-La(SSB) antibodies are as follows:

• For first-time mothers or mothers who have had only healthy babies: 2 percent.
• For mothers who have previously given birth to a child with heart block: 18 percent.

Potential Lupus Complications During Pregnancy

Lupus flare

• morning stiffness and swollen joints
• fever
• development or worsening of a rash

Miscarriage

• cramping
• vaginal bleeding (spotting to heavy bleeding)

Pregnancy-induced hypertension

• blood pressure 140/90 and over during the second half of pregnancy
• generalized edema
• proteinuria

Pre-eclampsia

• blood pressure 140/90 and over during the second half of pregnancy
• proteinuria
• epigastric pain
• hyperreflexia
• edema, including face and hands
• headache

Eclampsia

• all of the symptoms of preeclampsia
• seizures

Neonatal lupus

• transient rash
• transient blood count abnormalities
• heartblock

Potential Problems

1. lupus flare
2. increased risk of spontaneous abortion or stillbirth
3. pregnancy-induced hypertension
4. increased risk of prematurity
5. neonatal lupus

Nursing Interventions

Objective: Educate the woman regarding birth control options and risks of pregnancy.

1. Encourage patient to plan pregnancy during remission and only after consulting with her doctor.
2. Discuss birth control options:
• Barrier methods (diaphragm or condom with spermicidal foam) are the safest.
• Intrauterine devices (IUD) should be considered for people with lupus on a caseby-case basis. Women on immunosuppressive drugs in particular may be at increased risk of infections from IUDs. Women with thrombocytopenia may have an increased risk of bleeding.
• Oral contraceptives may be appropriate if there are no APLs.
3. Discuss the potential risks of pregnancy and the importance of careful monitoring.

Objective: Ensure a healthy, full-term pregnancy.

1. Urge patient to keep appointments with her primary doctor and obstetrician.
2. Instruct patient to observe for signs of complications or an impending flare.
3. Monitor blood pressure and watch for signs of toxemia, which may be hard to distinguish from a lupus kidney flare.

Note: For additional information, see the Patient Information Sheet in Chapter 7 on Pregnancy and Lupus.

Infection

Overview

SLE affects the immune system, thus reducing the body’s ability to prevent and fight infection. In addition, many of the drugs used to treat SLE also suppress the function of the immune system, thereby further depressing the ability to fight infection. The risk of infection parallels medication dosages and duration of treatment.

Patients with SLE who show signs and symptoms of infection need prompt therapy to prevent it from becoming life threatening. The most common infections involve the respiratory tract, urinary tract, and skin and do not require hospitalization if they are treated promptly. Other opportunistic infections, particularly Salmonella, herpes zoster, and Candida infections, are more common in patients with SLE because of altered immune status.

Potential Manifestations of Infection

Respiratory tract infections

• sore throat
• sneezing
• fever
• productive or nonproductive cough
• runny nose
• malaise
• chills
• back and muscle pain
• dyspnea
• wheezing or rales
• nausea
• vomiting

Urinary tract infections

• chills
• fever
• flank pain
• nausea
• vomiting
• urinary frequency
• dysuria
• hematuria

Skin infections

• lesions
• redness
• swelling
• tenderness or pain

Potential Problems

1. Increased risk of infection

Nursing Interventions

Objective: Minimize incidence of infection.

1. Assess the patient’s current medications, particularly those that promote susceptibility to infection such as corticosteroids and immunosuppressives.
2. Teach the patient to use good hand-washing and personal-hygiene techniques.
3. Teach the patient the signs and symptoms of infection and reinforce the importance of reporting them to the physician.
4. Encourage the patient to eat a balanced diet with adequate calories to help preserve the immune system.
5. Teach the patient to minimize exposure to crowds and people with infections or contagious illnesses.

Objective: Educate the patient about immunizations.

1. Check the patient’s current immunization status.
2. Teach the patient that infections can be minimized with immunizations.
3. Encourage the patient to consult her or his doctor before considering allergy shots or flu or pneumococcal vaccines; these medications may induce a lupus flare.

Note: For additional information, see the section on general manifestations of SLE in this chapter. Also see the Patient Information Sheet in Chapter 7 on Fever and Lupus.

Nutrition

Overview

The patient with lupus often has special nutritional needs related to medical conditions that may arise during the course of the disease. These conditions include steroid-induced osteoporosis or diabetes, cardiovascular disease, and kidney disease. For the SLE patient to maintain optimal health, the nurse must work closely with the patient, dietitian, and physician to develop a nutritional plan specific to the patient’s disease and manifestations.

Potential Manifestations of Nutritional Problems

• weight loss or gain
• loss of interest in food
• anorexia
• dry, rough, scaly skin
• dull, dry, brittle, thin hair
• loss of lean muscle mass
• listlessness, apathy
• poor muscle tone
• constipation or diarrhea
• irritability
• fatigue and lack of energy
• inflamed or bleeding gums

Potential Problems

1. weight changes
2. anorexia
3. alteration in nutritional status due to drug therapy or complications of SLE

Nursing Interventions

Objective: Determine the causes of the patient’s altered nutritional status.

1. Conduct a physical assessment of the patient, including weight, height, and percentage of body fat.
2. Assess the patient’s nutritional intake by asking her or him to keep a food diary.
3. Assess the patient’s current medications and doses.
4. Determine dietary and nutrient intake and vitamin/mineral supplement intake, food sensitivities (allergies may provoke a flare), food preferences, and experience with fad diets to “cure” lupus.
5. Assess the patient for signs and symptoms of SLEassociated conditions, including osteoporosis, diabetes, and cardiovascular and kidney disease.
6. Monitor laboratory values such as hemoglobin, hematocrit, serum ferritin, serum iron, total cholesterol, HDL, LDL, VLDL, triglycerides, and plasma protein levels.
7. Assess the patient for signs and symptoms of depression.
8. Assess the patient’s knowledge of nutrition and understanding of a healthful diet.
9. Assess the patient’s ability to purchase and prepare meals.
10. Assess the patient’s activity level.
11. Assess the cultural, socioeconomic, and religious factors that may influence the patient’s diet.

Objective: Educate patient about healthful eating to prevent alteration in nutritional status.

1. Encourage the patient to maintain a healthful diet, and discuss nutritional claims of “curing lupus,” which are often misleading.
2. Provide the patient with information on the basics of a well-balanced diet and its importance in a chronic disease such as lupus.
3. Instruct the patient to take iron supplements only if iron stores are depleted.
4. Suggest vitamin and mineral supplementation, if necessary.
5. Refer the patient to dietitian for assistance in dietary planning for serious conditions associated with SLE.

Note: For additional information, see the Patient Information Sheet in Chapter 7 on Nutrition and Lupus.

Other National Institutes of Health Sponsors

National Center for Minority Health and Health Disparities
National Institute of Nursing Research
Office of Research on Women's Health