Lupus patients can help themselves improve their disease by initiating lifestyle changes that, in controlled studies, diminish morbidity and mortality (Table 10.1).1
Physical Measures and Exercise
Sun avoidance is advised. Outdoor activities should be undertaken in the early morning, late afternoon, or early evening. Individuals living at sea level get less ultraviolet exposure than those at higher altitudes. Sun-protective clothing is available for purchase from several Web sites. Table 10.2 contains a list of sunscreens that block ultraviolet A and B light. Painful joints respond to moist heat. Changes in barometric pressure may increase stiffness or aching. Fatigue is managed with pacing, alternating periods of activity with rest. Restful sleep is important. Physical and occupational therapists can teach patients how to maximize their body mechanics, perform an evaluation of activities of daily living, recommend ergonomic saving measures, and promote the use of assistive devices. Exercise diminishes inflammation and steroid-induced muscular atrophy and demineralization. Inflamed joints should not be isotonically exercised, but range-of-motion activities decrease risks for contractures and deformity. Pilates-based stretching and isometric-based strengthening are recommended, along with walking and low-impact aerobics. If fibromyalgia is present, weight-lifting, rowing, tennis, bowling, and golf should be restricted, as they tend to increase upper back and neck discomfort.3
Diet
The “lupus diet” is a well-balanced diet. Alfalfa sprouts may aggravate lupus; fish and fish oil supplements have anti-inflammatory properties. Individuals on corticosteroids should adopt a diabetic and antihypertensive diet with salt, cholesterol, and carbohydrate restriction. Protein restriction is recommended with advanced renal disease.
Managing Fatigue and Smoking
Fatigue is reported in over 90% of persons with systemic lupus erythematosus and can result from inflammation, depression, medications, comorbidities (e.g., anemia, hypothyroidism), or fibromyalgia, among other factors.2 The cause or causes of fatigue need to be delineated. Treatment measures include pacing, an exercise program, and optimal sleep hygiene for managing the source of fatigue.3 Smoking worsens Raynaud’s phenomenon and diminishes aerobic capacity, which further aggravates fatigue and interferes with the efficacy of anti-malarial therapies.4
Table 10.1 Non-lupus medication measures shown to have a favorable evidence based impact upon lupus5
1. Educating patients about the disease
2. A well-balanced diet, especially one that restricts carbohydrate and fat intake in patients taking corticosteroids
3. Aerobic exercise
4. Being up to date with immunizations
5. Smoking cessation
6. Being compliant with appointments and adherent with medication regimens
7. Stress-reduction measures
8. Establishing a coordinated primary care/lupus specialist interface to ensure health maintenance standards
9. Screening for accelerated atherogenesis
10. Bone density measurements when appropriate
11. Sun protection measures
Psychosocial Support
Emotional stress flares autoimmune disease in animal models, and many patients experience more symptoms while experiencing psychosocial stressors. Coping is often difficult because of fears, anxiety, anger, pain, or depression. Additionally, patients may not look sick, and physician-patient relationships can be suboptimal. Patients are encouraged to develop concrete goals and positive attitudes, optimize their family environment, and seek counseling where appropriate. Cognitive-behavioral therapy, biofeedback, and stress-reduction strategies have been shown to improve coping mechanisms in evidence-based studies.
Table 10.2 Sun protection and safe sun habits
1. Schedule outdoor activities before 10 AM and after 4 PM
2. Up to 80% of ultraviolet (UV) light penetrates cloud cover and can be reflected from water, concrete, sand, snow, tile, and reflective glass in buildings. Extra care is important at higher altitudes.
3. Clothing is an excellent form of sun protection, especially loose-fitting, lightweight dark clothing, sunglasses, and broad-brimmed hats.
4. Protective clothing for UV-B light with a sun protective factor of 30 or higher. Sunblocks should be applied 15-20 minutes before sun exposure and can be liberally applied. UV-A protection is also desirable. Do not apply to broken skin or rashes.
5. UV-B sunblocks with avobenzone and zinc oxide also block UV-A1, and titanium dioxide are the best for very sensitive skin.
6. Sunblocks are available as creams, lotions, gels, sprays, sticks, in waterproof and heat-resistant forms as well as in lip and eyelid formulations.
Adjunctive Measures: Osteoporosis, Allergies, Vaccinations, and Antibiotics
Inflammation from SLE demineralizes bones, as do corticosteroids and methotrexate, among other agents. Lupus patients should undergo bone density screening at regular intervals. Bisphosphonates are the agent of choice for those at risk; raloxifene is contraindicated in some due to its thrombotic potential. Individuals with SLE have the same to a slightly increased risk for allergies compared with the general population. A minority may flare with immunotherapy, and this intervention should only be used if other measures fail and it is closely followed. Live vaccinations are usually contraindicated in lupus patients unless they are in a total remission off medication. Patients who are immunosuppressed have a normal to decreased response to killed vaccines. Post-immunization disease flares are infrequent, but they do occur. Sulfa-based antibiotics with an arylamine component (e.g., sulfamethoxasole) are sun-sensitizing and should be avoided. Minocyclines may flare lupus as well, but doxycyclines are safe. Dental antibiotic prophylaxis is advisable in immunosuppressed patients or those with antiphospholipid syndrome.
References
1. Wallace DJ. Principles of therapy and local measures. In: DJ Wallace, BH Hahn, eds. Dubois’ Lupus Erythematosus. 7th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2007:1132–1134.
2. Ad Hoc Committee on Systemic Lupus Erythematosus Response Criteria for Fatigue. Measurement of fatigue in systemic lupus erythematosus: a systemic review, Arthritis Care Res. 2003;57:1348–1357.
3. Robb-Nicholson LC, Daltroy L, Eaton H, et al. Effects of aerobic conditioning in lupus fatigue: a pilot study. Br J Rheumatol. 1989; 28:500–505.
4. Ghaussy NO, Sibbitt W Jr, Bankhurst AD, Qualls CR. Cigarette smoking and disease activity in systemic lupus erythematosus. J Rheumatol. 2003;30:1215–1221.
5. Wallace DJ. Improving the prognosis of SLE without prescribing lupus drugs and the primary care paradox. Lupus. 2008;17:91–92.