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Dedicated to increasing awareness about
systemic lupus erythematosus (SLE), disease activity and related organ damage


Several organ systems are commonly involved in SLE and should be regularly monitored in all patients for disease activity, even in patients with mild stable disease. They include the central nervous system, kidneys, gastrointestinal system, mucous membranes, heart, skin, hematologic system, musculoskeletal system, and lungs.1-3

Periodic follow-up and laboratory testing, including complete blood counts with differential, creatinine, and urinalyses are imperative for detecting signs and symptoms of new organ-system involvement and for monitoring response and adverse reactions to therapies.4

Patients with very mild stable disease should be monitored every 3 to 6 months.4

periodic monitoring periodic monitoring periodic monitoring

Periodic assessment of complement levels and dsDNA titers may be used as adjuncts to clinical evaluation for predicting lupus flares.5

The SELENA-SLEDAI can be used to objectively assess a patient's overall disease activity. It is included for the purpose of demonstrating how the variables you may already be evaluating in your clinical practice correlate with the SELENA-SLEDAI disease descriptors.

Considerations for Monitoring for Organ Damage

Cardiovascular (CV) disease may be subclinical in patients with SLE — prevalence of plaques in internal carotid arteries is 3 times higher and endothelial dysfunction, an early marker of atherosclerosis, is 2 times as common compared to the control group.6,7

Risks of coronary heart disease and stroke are significantly higher for patients with SLE compared to general population. Patients with SLE are at 2 to 10 times increased risk of CHD and 6 to 8 times increased risk of stroke.8,9

When monitoring for CV health in patients with SLE, consider the following:

  • Refer to traditional Framingham risk factors and lupus-associated risk factors such as duration and level of disease activity and homocysteine levels8
  • Even in young patients (35-44 years) with SLE, chest pain could be a warning sign of ischemic heart disease9,10
  • Evaluate patients at least once yearly11

Patients with SLE are at an increased risk for fracture — patients with SLE are 5 times more likely to have bone fracture compared to age-matched controls. In addition, patients ages 18 to 24 are 12 times more likely to have bone fracture compared to general population.12

When monitoring for bone health in patients with SLE, consider the following:

  • Monitor regularly for the signs of osteoporosis early in disease course, since bone fracture risk associated with SLE disease activity may be independent of glucocorticoid use or menopausal status13
  • Monitor more frequently if patient has additional risk factors (e.g., menopause)14

Nephritis is one of the most serious complications of SLE. The majority of patients will develop renal damage in the course of the disease.1 During the first 10 years after diagnosis, 60% of patients will develop renal abnormalities.15

Renal damage is one of the most important predictors of mortality.16

When monitoring for kidney disease in patients with SLE, consider the following:

  • Assess patient's history of renal disease
    • Urinalysis should be routinely performed, even in the absence of previously diagnosed nephritis15
    • Evaluate associated risk factors and perform diagnostic assessments15
  • The risk of end stage renal disease is:
    • 11% 5 years after diagnosis17
    • 22% 15 years after diagnosis17
  • For patients with diagnosed nephritis, monitoring should be performed regularly15

Cognitive impairment is the most frequent neurologic damage in SLE — affecting up to 80% of patients with SLE.18 Difficulties in concentration, attention, memory and visual perception are common.19 Headache, depression and anxiety are also common.20

When monitoring for cognitive impairment in patients with SLE, consider the following:

  • Refer to ACR nomenclature for neuropsychiatric syndromes to aid in diagnosis4
  • For patients with symptoms of cognitive impairment, monitor their clinical history, and perform standardized neuropsychological testing21

Approximately 8 in 10 patients experience skin-related symptoms. The "butterfly" rash extending over the cheeks and bridge of the nose is a classic manifestation in patients with SLE.1

When monitoring for skin manifestations in patients with SLE, consider the following:

  • Assess patient history of dermatologic issues and perform a physical examination and serological studies4
  • Progression of dermatologic manifestations of lupus can be monitored through physician assessment and additional specialist consultation with a dermatologist4
  • Encourage patients to report all rashes, oral ulcers, and sensitivities4

Eye disease occurs in 20% of patients with SLE, which may result from the inflammatory process of SLE and/or as a drug-related side effect.1

When monitoring for eye disease in patients with SLE, consider the following:

  • Assess for patient history of ophthalmic issues, perform a physical examination, and assess the field of vision22
  • Patients' eyes should be monitored on a regular basis, based on the severity of their symptoms22
  • Refer the patient to an ophthalmologist if it is determined that the patient has ophthalmic issues22

Healthcare providers can engage patients with SLE to be advocates in their own health by self-monitoring day to day. There are patient tools available for you to share with your patients. Learn more now.


This worksheet is designed to help patients record symptoms and other changes in their health.

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This worksheet includes a checklist of symptom categories and actions to help your patients track the severity of their symptoms, and select the actions that they plan to take.

English Version (PDF)

Spanish Version (PDF)


This worksheet is designed to help your patients rate the impact of SLE on their health.

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The Lupus Impact Tracker is a trademark of Rush University Medical Center and the Board of Trustees.


This slide deck discusses the path to diagnosis of SLE, pathogenesis of the disease, impact on patients, and how to best support patients.

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What Next?

Balancing risk versus benefit should be carefully considered in
managing patients
with SLE.23

Learn more now

1. National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, US Department of Health and Human Services. Lupus: A Patient Care Guide for Nurses and Other Health Professionals. 3rd ed. Bethesda, MD: National Institute of Arthritis and Musculoskeletal and Skin Diseases; 2006. NIH publication 06-4262. Accessed February 14, 2017. 2. Lopez R, Davidson JE, Beeby MD, et al. Lupus disease activity and the risk of subsequent organ damage and mortality in a large lupus cohort. Rheumatology (Oxford). 2012;51(3):491-498. Accessed February 14, 2017. 3. National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, US Department of Health and Human Services. What Is Lupus? Fast Facts: An Easy-to-Read Series of Publications for the Public. Bethesda, MD: National Institute of Arthritis and Musculoskeletal and Skin Diseases; 2009. 4. American College of Rheumatology Ad Hoc Committee on Systemic Lupus Erythematosus Guidelines. Guidelines for referral and management of systemic lupus erythematosus in adults. Arthritis Rheum. 1999;42(9):1785-1796. Accessed February 14, 2017. 5. Bartels CM. Systemic Lupus Erythematosus (SLE) Treatment & Management. Medscape. Updated September 25, 2015. Accessed February 14, 2017. 6. Ahmad Y, Shelmerdine J, Bodill H, et al. Subclinical atherosclerosis in systemic lupus erythematosus (SLE): the relative contribution of classic risk factors and the lupus phenotype. Rheumatology (Oxford). 2007;46(6):983-8. Accessed February 14, 2017. 7. El-Magadmi M, Bodill H, Ahmad Y, et al. Systemic lupus erythematosus: an independent risk factor for endothelial dysfunction in women. Circulation. 2004;110(4):399-404. Accessed February 14, 2017. 8. Magder LS, Petri M. Incidence of and risk factors for adverse cardiovascular events among patients with systemic lupus erythematosus. Am J Epidemiol. 2012;176(8):708-719. Accessed February 14, 2017. 9. Schoenfield S, Kasturi S, Costenbader K. The epidemiology of atherosclerotic cardiovascular disease among patients with SLE: a systematic review. Seminars Arthritis Rheum. 2013;43:77-95. Accessed February 14, 2017. 10. Ward MM. Premature morbidity from cardiovascular and cerebrovascular diseases in women with systemic lupus erythematosus. Arthritis Rheum. 1999;42(2):338-346.;2-U. Accessed February 14, 2017. 11. Mosca M, Tani C, Aringer M, et al. European league against rheumatism recommendations for monitoring patients with systemic lupus erythematosus in clinical practice and in observational studies. Ann Rheum Dis. 2010;69(7):1269-1274. Accessed February 14, 2017. 12. Ramsey-Goldman R, Dunn JE, Huang CF, et al. Frequency of fractures in women with systemic lupus erythematosus: comparison with United States population data. Arthritis Rheum. 1999;42(5):882-90.;2-C. Accessed February 14, 2017. 13. Grossman J, Gordon R, Ranganath V, et al. American College of Rheumatology 2010 recommendations for the prevention and treatment of glucocorticoid-induced osteoporosis. Arthritis Care Res. 2010;62:1515-1526. Accessed February 14, 2017. 14. Bultink IE, Harvey NC, Lalmohamed A, et al. Elevated risk of clinical fractures and associated risk factors in patients with systemic lupus erythematosus versus matched controls: a population-based study in the United Kingdom. Osteoporos Int. 2014;25(4):1275-83. Accessed February 14, 2017. 15. Hahn BH, McMahon MA, Wilkinson A, et al. American College of Rheumatology guidelines for screening, treatment, and management of lupus nephritis. Arthritis Care Res. 2012;64(6):797-808. Accessed February 14, 2017. 16. Danila MI, Pons-Estel GJ, Zhang J, et al. Renal damage is the most important predictor of mortality within the damage index: data from LUMINA LXIV, a multiethnic US cohort. Rheumatology (Oxford). 2009;48(5):542-5. Accessed February 14, 2017. 17. Tektonidou MG, Dasgupta A, Ward MM. Risk of End-stage Renal Disease in Patients with Lupus Nephritis, 1970 to 2015: A systematic review and Bayesian meta-analysis. Arthritis Rheumatol. 2016;68(6):1432-41. Accessed February 14, 2017. 18. Petri M. Monitoring systemic lupus erythematosus in standard clinical care. Best Pract Res Clin Rheumatol. 2007;21(4):687-697. Accessed February 14, 2017. 19. Kajs-Wyllie M. Lupus cerebritis: a case study. J Neurosci Nurs. 2002 Aug;34(4):176-83. Accessed February 14, 2017. 20. Brey RL, Holliday SL, Saklad AR, et al. Neuropsychiatric syndromes in lupus: Prevalence using standardized definitions. Neurology. 2002;58:1214–1220. Accessed February 14, 2017. 21. Carlomagno S, Migliaresi S, Ambrosone L, et al. Cognitive impairment in systemic lupus erythematosus: a follow-up study. J Neurol. 2000;247(4):273-279. Accessed February 14, 2017. 22. Sivaraj RR, Durrani OM, Denniston AK, Murray PI, Gordon C. Ocular manifestations of systemic lupus erythematosus. Rheumatology (Oxford). 2007;46(12):1757-1762. Accessed February 14, 2017. 23. Levy DM, Kamphuis S. Systemic lupus erythematosus in children and adolescents. Pediatr Clin North Am. 2012;59(2): 345–364. Accessed February 14, 2017.