Care of the Lupus Patient

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 effectively care 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 article 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 article 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 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 are tremendous for the patient and family as independence is gained and the trust in the ability to care for oneself is strengthened.

Continued

Systemic Lupus Erythematosus

General Manifestations

Fatigue, fever, psychological and emotional effects.

Specific Manifestations

Dermatologic: Butterfly rash, photosensitivity, DLE, subcutaneous LE, mucosal ulcers, alopecia, pain and discomfort, pruritus, bruising.

Musculoskeletal: Arthralgias, arthritis, other joint complications.

Hematologic: Anemia, decreased WBC count, thrombocytopenia, lupus anticoagulants, false-positive VDRL, elevated ESR.

Cardiopulmonary: Pericarditis, myocarditis, myocardial infarction, vasculitis, pleurisy, valvular heart disease.

Renal: Asymptomatic microscopic renal involvement, renal failure, fluid and electrolyte imbalance, urinary tract infection.

Central Nervous System (CNS): General CNS symptomology, cranial neuropathies, cognitive impairment, mental changes, seizures.

Gastrointestinal: Anorexia, ascites, pancreatitis, mesenteric or intestinal vasculitis.

Ophthalmologic: Eyelid problems, conjunctivitis, cytoid bodies, dry eyes, glaucoma, cataracts, retinal pigmentation.

Other Key Issues

Pregnancy: Lupus flare, miscarriage or stillbirth, pregnancy-induced hypertension, neonatal lupus.

Infection: Increased risk of respiratory tract, urinary tract, and skin infections; opportunistic infections.

Nutrition: Weight changes; poor diet; appetite loss; problems with taking medications; increased risk of cardiovascular disease, diabetes, osteoporosis, and kidney disease.

Systems Potentially Affected by Lupus

Care of the Lupus Patient

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 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.

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, gastrointestinal 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% 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 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.

Continued

Psychological and emotional effects, such as grief, depression, and anger, are commonly experienced by lupus patients. These can be related to the outward changes, such as skin alterations, caused by the disease as well as by 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 Problems

  1. Inability to complete activities of daily living (ADL) because of fatigue, weakness, and psychological difficulties
  2. Changes in weight
  3. Fever

Nursing Interventions

Objective: Minimize Fatigue

  1. Assess patient's general fatigue level.
  2. Assess for the presence of depression, anxiety, and other stressors.
  3. Conduct assessment to determine patient's daily activities that contribute to fatigue.
  4. Help patient to develop an energy-conserving plan for completing daily and other activities and work.
  5. Suggest planning for rest periods as needed throughout the day to conserve energy.
  6. Encourage patient to get 8-10 hours of sleep at night.
  7. Encourage exercise as tolerated.

Objective: Maintain Weight at Optimal Range

  1. Assess patient's prescription and non-prescription 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 patient's weight at each visit.
  6. Instruct patient to weigh herself or himself at home once a week and record it.

Potential Physiological Manifestations

  • Fatigue
  • Weight gain or loss
  • Fever -- increased temperature over normal baseline
  • Elevated WBC

Potential Psychological Manifestations

  • Lowered self-esteem
  • Negative feelings about body
  • Decreased confidence
  • Feelings of decreased self-worth
  • Depression
  • Feelings of sadness, hopelessness, helplessness
  • Difficulty in completing self-care activities, caring for children, maintaining a household, and other activities of daily living (ADL)
  • Inability to maintain full- or part-time employment
  • Decreased social activities
  • Lack of energy or ambition
  • Irritability
  • Impaired concentration
  • Crying
  • Insomnia
  • Suicidal thoughts

Objective: Teach Patient to Recognize Fever and Signs and Symptoms of Infection

  1. Assess patient's prescription and non-prescription drug regimen and dosages.
  2. Monitor patient's WBC count.
  3. Teach patient to monitor temperature during a lupus flare.
  4. Teach 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 patient to call physician if signs and symptoms of an infection appear or if a fever is elevated above normal baseline.

Continued

Objective: Assist Patient in Adjusting to Physical and Lifestyle Changes

  1. Allow patient to express feelings and needs.
  2. Assess patient's usual coping mechanisms.
  3. Acknowledge that feelings of denial and anger are normal.
  4. Explore with patient sources of potential support and community resources.
  5. Explore possible ways of concealing skin lesions and hair loss.
  6. Encourage patient to discuss interpersonal and social conflicts that arise.
  7. Encourage 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 patient for the major signs and symptoms of depression.
  2. Assess patient's interpersonal and social support systems.

  3. Encourage patient to express feelings.
  4. Initiate a referral to a mental health counselor or psychiatrist.

Dermatologic Manifestations

Overview

Approximately 80% of patients with SLE have skin manifestations and often suffer from itching, pain, and 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 a faint blush to a severe eruption with scaling. It is photosensitive, and it may be transitory or fixed. Between 55 and 85% of patients develop this rash at some time in the course of the disease.

Other rashes may occur elsewhere on the face and ears, upper arms, shoulders, chest, and hands. DLE is seen in 15-30% of patients with SLE. Subacute cutaneous LE, seen in about 10% of SLE patients, produces highly photosensitive papules that itch and burn. Skin changes, especially the butterfly rash and 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 (paroxysmal vasospasm of the fingers and toes) 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.

Continued

Varying levels of pain and discomfort due to skin alterations may occur. Pruritus accompanies many types of skin lesions. Attacks of Raynaud's phenomenon can cause a deep tingling feeling in the hands and feet that can be very uncomfortable. Both pain and itching may affect a patient's ability to carry out activities of daily living (ADL).

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 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 appearance and duration of lesions and rashes.
  2. Teach 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 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 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. Instruct patient to take medications that may help to alleviate discomfort and itching as ordered. (The doctor may give the patient intralesional steroid injections.)
  3. Suggest self-help measures for patients with Raynaud's phenomenon, including: 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; and exercise as tolerated.

Objective: Help Patients to Cope with Potential Psychological Manifestations

See the nursing interventions dealing with psychological issues under manifestions in this article.

Musculoskeletal Manifestations

Overview

Arthralgia or arthritis is experienced by 95% 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.

Continued

Unlike rheumatoid arthritis, the arthritis of SLE tends to be transitory. Proliferation of the synovium is more limited, 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 Jaccoud's arthropathy and osteonecrosis. Subcutaneous nodules, especially in the small joints of the hands, are seen in about 5% of patients. Tendinitis, tendon rupture, and carpal tunnel syndrome are seen occasionally.

Potential Musculoskeletal Manifestations

  • Morning stiffness and aching
  • Joint pain
  • Warm, swollen joints
  • Ulnar deviation of the fingers with swan neck deformities and subluxations
  • Generalized myalgia and muscle tenderness, especially in the upper arms and upper legs

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)
  • Itching and burning
  • Ulcers in the mouth, vagina, or nasal septum
  • Atrophy (including striae or stretch marks)
  • Impaired wound healing
  • Easy bruising
  • Petechiae
  • Increased body hair (hirsutism)
  • Steroid-induced ecchymosis
  • Ulcers or gangrene on fingers or toes
  • Alopecia

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 patient's self-management techniques for controlling pain.
  3. Teach patient to apply heat or cold as appropriate.
  4. Instruct patient in use of prescription and nonprescription pain medications.
  5. If ordered by physician, teach patient to apply splints or braces.

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 patient that an inflamed joint should not bear weight and suggest that patient avoid strenuous activity.
  4. If needed, assist patient to obtain crutches, a walker, or a cane.
  5. Assist patient in developing a regular exercise plan that can be carried out during periods of remission. This plan should include exercises that promote muscle tone and fitness, minimize fatigue, and increase well-being.
  6. Consider referring patient to an occupational therapist.

Continued

Hematologic Manifestations

Overview

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

Anemia, which is common in SLE patients, reflects insufficient bone marrow activity, shortened RBC life span, or poor iron uptake. Aspirin, NSAIDs, and prednisone can cause stomach bleeding and exacerbate the condition. There is no specific therapy for this type of anemia. Immune-mediated anemia (or hemolytic anemia), which is due to antibodies directed at RBCs, is treated with corticosteroids.

Thrombocytopenia may occur and may respond to low-dose 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 APLs and APL syndrome are venous thrombosis, arterial thrombosis, and thrombocytopenia with a history of positive anticardiolipin antibody (ACL) 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 active SLE, but it does not always mirror disease activity.

Potential Problems

  1. Inability to complete ADL because of fatigue and weakness.
  2. Anemia
  3. Potential for hemorrhage
  4. Potential to develop venous or arterial thromboses
  5. Increased risk of infection

Potential Hematologic Manifestations

Anemia

  • Decreased hemoglobin and hematocrit values
  • Positive Coombs' test (hemolytic anemia)
  • Tachycardia
  • Palpitations
  • Dizziness
  • Sensitivity to cold
  • Chronic fatigue, lethargy, and malaise
  • Pallor
  • Weakness
  • Dyspnea on exertion
  • Headache

Thrombocytopenia

  • Petechiae
  • Excessive bruising of skin
  • Bleeding from gums, nose
  • Blood in stool

Nursing Interventions

Objective: Minimize Fatigue

  1. Refer to the nursing interventions for fatigue in this article.

Objective: Recognize Anemia and Develop Plan of Care

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

Objective: Minimize Episodes of Bleeding

  1. Assess 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 patient why she or he is at risk of bleeding (low platelet count, anemia, thrombocytopenia) and to report episodes to physician.
  3. Encourage patient to wear a medical alert bracelet or carry a card.
  4. Teach patient measures to prevent bleeding, such as use of a soft toothbrush or an electric shaver.

Objective: Decrease Risk of Infection

  1. See the nursing interventions for infection in this article.

Continued

Cardiopulmonary Manifestations

Overview

Cardiac abnormalities contribute significantly to morbidity and mortality in SLE and are one of 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, has been reported in SLE patients below the age of 35 years.

Vasculitis (inflammation of the blood vessels) and serositis (inflammation of serous membranes) are frequently part of the autoimmune pathology of SLE. These conditions respond well to corticosteroids. Vasculitis may cause many different symptoms, depending on the system(s) most affected. Serositis most commonly presents as pleurisy or pericarditis. 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 Problems

  • Alterations in cardiac function
  • Potential for impaired gas exchange and ineffective breathing patterns
  • Alteration in tissue perfusion

Nursing Interventions

Objective: Detect Changes in Cardiac Function

  1. Assess patient for signs and symptoms of potential cardiac problems.
  2. Teach 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 patient about medications.
  4. Educate 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 patient the basics of good foot care.
  6. Teach patient to avoid cold temperatures and to keep the hands and feet warm, especially in winter months.
  7. Teach patient 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 patient the signs and symptoms of potential venous or arterial thrombosis and reinforce the need to contact a physician immediately.

Continued

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
  • Fever
  • Chills
  • Audible pericardial friction rub

Myocarditis

  • Chest pain
  • Shortness of breath
  • Fever
  • Fatigue
  • Palpitations

Atherosclerosis Leading to Myocardial Infarction

Warning signs of myocardial infarction:

  • 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
  • Coughing up blood or thick mucus

Periungual Erythema

  • Redness in the nailbed

Livedo Reticularis

  • A reddish or cyanotic pattern seen on arms, legs, torso, especially in cold weather

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 antiphospholipid antibodies

Venous Thrombosis

  • Positive Homans' sign
  • 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
  • Panesthesias and loss of position sense
  • Coldness
  • Pallor
  • Paralysis
  • No pulse

Renal Manifestations

Overview

Renal damage is one of the most serious complications of SLE. The majority of lupus patients have some degree of asymptomatic microscopic kidney damage. Less than 50% have clinical renal disease, and most of those with renal disease have one of the milder forms. 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 Problems

  1. Impaired renal function
  2. Fluid and electrolyte imbalance
  3. Increased risk of infection

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

Continued

Objective: Decrease Fluid Retention and Edema

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

Objective: Minimize Risk of Infection

  1. Teach patient to watch for the signs and symptoms of urinary tract infection and to report them to the physician.
  2. Instruct 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 patient to take antibiotics for urinary tract infection as prescribed.

Potential Renal Manifestations

SLE Nephropathy

Signs and Symptoms:

  • Hematuria (as few as 5 RBCs is significant)
  • Proteinuria (>1+ to 2+)
  • Abacterial pyuria
  • Elevated creatinine level (indicates loss of renal function)
  • Elevated blood urea nitrogen (BUN)
  • Markedly abnormal serologic tests, such as decreased complement or elevated anti-DNA values
  • 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
  • Constant cough
  • 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

Urinary Tract Infection

  • Dysuria: Frequent urination
  • Urgent need to urinate
  • Fever
  • Cloudy urine
  • Incomplete emptying of the bladder
  • Low back or suprapubic pain
  • Flank pain
  • Malaise
  • Nausea and vomiting

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 to individual reactions to chronic illness.

Continued

Cranial or peripheral neuropathy occurs in 10-15% of patients; it is probably secondary to vasculitis in small arteries supplying nerves. Cerebrovascular accidents (strokes) are reported in approximately 15% of patients. Between 10 and 20% of patients experience seizures. Although cognitive impairment is believed to be very common, there are few measurements 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 Problems

  1. Alteration in mental status, cognition, and perception
  2. Altered ability to perform ADL and meet family responsibilities
  3. Potential for injury

Nursing Interventions

Objective: Develop Plan for Patient to Perform ADL Appropriately and Independently

Assess and document 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

Support patient's need to maintain some control over daily activities and decisions:

  • encourage patient to plan and participate in daily routines
  • set aside time to develop trust and rapport with patient, and be consistently truthful (patients are keenly aware of inconsistencies in information provided)

Potential CNS Manifestations

General CNS Lupus

  • Headaches
  • Fever
  • Confusion
  • Seizures
  • Psychosis

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

Cognitive Impairment

  • Confusion
  • Impaired long- and short-term memory
  • Difficulty in conceptualizing, abstracting, generalizing, organizing, and planning information for problem solving
  • Difficulties in personal and extrapersonal orientation
  • Altered visual-spatial abilities
  • 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

  • Movement disorder
  • Aphasia
  • Coma

Encourage patient to discuss effects of SLE on her or his personal life and coping methods. Allow expressions of fear and anger.

Continued

Objective: Assist Patient in Identifying Family and Community Support Services

  1. Assess patient's support network. Discuss alternatives for strengthening supports.
  2. Anticipate family concerns. Seek out the family to answer their questions and to provide support. Include significant others in patient care as appropriate.
  3. Help 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 patient and family in identifying and removing potentially dangerous items in the environment.
  2. Involve family members in planning of patient's care and safety measures.
  3. Assess patient's ability to safely administer own medications.

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 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 found in about 10% of SLE patients. Pancreatitis is a serious complication occurring in approximately 5% of SLE patients and is usually secondary to vasculitis.

Mesenteric or intestinal vasculitis are life-threatening conditions that may have complications of obstruction, perforation, or infarction. They are seen in more than 5% of patients with SLE. Abnormal liver enzyme levels are also found in about one-half of SLE patients (usually secondary to medications). Active liver disease is rarely found.

Potential Problems

  1. Alteration in GI function related to drug therapy or disease process
  2. Nutritional deficiencies

Nursing Interventions

Objective: Minimize Complications from GI Manifestations

  1. Assess 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 patient to immediately report any sudden or severe abdominal pain, shortness of breath, or epigastric pain to physician.
  5. Refer patient to dietitian.

Continued

Potential GI Manifestations

General Manifestations

  • Persistent sore throat
  • Dry mouth (characteristic of patients with coexisting Sjogren'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

Ophthalmologic Manifestations

Overview

Visual impairment may be due to SLE or to drug treatment (corticosteroids or antimalarials), or it may be a separate problem (glaucoma or retinal detachment). Blindness due to SLE occurs, but is rare. Other visual problems may occur:

  • A lupus rash may develop on the eyelids.
  • Conjunctivitis occurs in 10% of SLE patients and is usually infectious. Kerato-conjunctivitis is usually mild.
  • 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.
  • Sjogren's syndrome is an autoimmune condition manifest as excessive dryness of mucous membranes. Lupus patients with these symptoms require artifical tears to relieve dry eyes.
  • Glaucoma and cataracts may be caused by corticosteroids.
  • Antimalarials can damage the retina, which can impair vision (particularly color vision) or, rarely, cause blindness.

Potential Ophthalmologic Manifestations

  • A lupus rash on the eyelids
  • Red, sore, swollen eyes
  • Tearing
  • Mucus discharge from eyes, particularly upon awakening
  • Sensitivity to light
  • Change in vision
  • Blurred vision
  • Cloudy lens(es)
  • Dry eyes
  • Burning sensation in eyes

Potential Problems

  • Discomfort
  • Visual impairment
  • Potential for injury
  • Difficulty carrying out ADL

Nursing Interventions

Objective: Minimize Discomfort

  1. Allow time for 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 patient the correct way to take prescribed medications, such as eye drops for glaucoma.
  4. Suggest warm, moist compresses, which may help ease discomfort and itching from conjunctivitis.

Objective: Minimize Potential for Serious Visual Impairment or Blindness

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

Objective: Develop a Plan for Patient to Perform ADL Appropriately and Independently

  1. Provide referrals to support groups and services for the visually impaired.

Continued

Pregnancy

Overview

Twenty 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 20-25% of lupus pregnancies end in miscarriage, compared with 10-15% of pregnancies in women without the disease. Pregnancy counseling and planning before pregnancy is important. Optimally, a woman should have no signs or symptoms of lupus before she becomes pregnant.

Researchers have now identified two closely related lupus autoantibodies, anticardiolipin antibody and lupus anticoagulant, that are associated with risk of miscarriage. One-third to one-half 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 or heparin throughout their pregnancy.

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% of babies of women with lupus are born prematurely, but do not suffer from birth defects.

About 3% of babies born to mothers with SLE will have neonatal lupus, or specific antibodies called anti-Ro(SSA) and anti-La(SSB). This is not the same as SLE and is almost always temporary. The syndrome is thought to be caused by passive transfer of anti-Ro antibodies from the mother to the fetus. About one-third of women with SLE have this antibody. By 3-6 months of age, the rash and blood abnormalities associated with neonatal lupus disappear. Very rarely, babies with neonatal lupus will have a congenital complete heart block. This problem is permanent, but can be treated with a pacemaker.

Continued

Potential Problems

  • Lupus flare
  • Increased risk of spontaneous abortion or stillbirth
  • Pregnancy-induced hypertension
  • Increased risk of prematurity
  • Neonatal lupus

Potential Lupus Complications During Pregnancy

Lupus flare

  • Increased pain
  • Morning stiffness
  • Fever
  • Development or worsening of a rash
  • Stomach discomfort
  • Headache
  • Dizziness

Miscarriage

  • Cramping
  • Vaginal bleeding (spotting to heavy bleeding)

Pregnancy-Induced Hypertension

Mild

  • Blood pressure 140/90 and over during the second half of pregnancy
  • Mild, 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

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.
    • OIUDs are not recommended because of increased risk of infection.
    • Oral contraceptives may be appropriate.
  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 flare.

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.

Continued

Potential Problems

  1. Increased risk of infection

Nursing Interventions

Objective: Minimize Incidence of Infection

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

Objective: Educate The Patient about Immunizations

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

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
  • Chills
  • Nausea
  • Vomiting

Urinary Tract Infections

  • Chills
  • Fever
  • Flank pain
  • Nausea
  • Vomiting
  • Urinary frequency
  • Dysuria
  • Hematuria

Skin Infections

  • Lesions
  • Redness
  • Swelling
  • Tenderness or pain

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 Problems

  • Weight changes
  • Anorexia
  • Alteration in nutritional status due to drug therapy or complications of SLE

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

Nursing Interventions

Objective: Determine the Causes of Patient's Altered Nutritional Status

  1. Conduct a physical assessment of patient, including weight, height, and percentage of body fat.
  2. Assess patient's nutritional intake by asking her or him to keep a food diary.
  3. Assess 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 patient for signs and symptoms of SLE-associated 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 patient for signs and symptoms of depression.
  8. Assess patient's knowledge of nutrition and understanding of a healthful diet.
  9. Assess patient's ability to purchase and prepare meals.
  10. Assess patient's activity level.
  11. Assess cultural, socioeconomic, and religious factors that may influence patient's diet.

Objective: Educate Patient about Healthful Eating to Prevent Alteration in Nutritional Status

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

Sources

"The National Institute of Arthritis and Musculoskeletal and Skin Diseases of The National Institutes of Health. Lupus Guide: Care of the Lupus Patient. Last revised, January 26, 1999. (Online) http://www.nih.gov/niams/healthinfo/lupusguide/chp4.htm"

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