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Diagnosing SLE

Diagnosing SLE in Denise took 2 years.

Unfortunately for Denise and her healthcare providers, their story is not unusual.

It is estimated that approximately 75% of patients with SLE have persistently active disease, but not all patients are symptomatic.2,3

An SLE diagnosis can be challenging. At times, diagnosing a patient can be time-consuming, requiring a high level of communication between the patient and the physician. Both parties must be thoroughly engaged in the process to ensure the best possible outcome in the short term and over time.4

  • Disease activity can be assessed by clinical features (eg, arthritis and rash), serologic features (eg, decreased complement and increased anti-dsDNA) and laboratory features (eg, urinalysis and WBC).1,5

    SLE Symptoms and Signs

    Neuropsychiatric syndromes may also occur in patients with SLE. Lupus symptoms may include6:

    • Cognitive dysfunction
    • Headache
    • Depression, anxiety
    • Seizures
    • Psychosis
    • Movement disorders

    Cardiovascular events, nephritis, and osteoporosis are also of major concern for patients with SLE.7-9  Visible SLE signs include1,10,11:

    • Swelling of joints
    • Fever > 100°F
    • Hair loss
    • Nose or mouth sores
    • Skin rash following sun exposure
    • Weight changes

     

  • There are long-term consequences for patients with persistent disease activity:

    • Possible predictor of lupus flares, which impacts morbidity and mortality2,12
    • Lower probability of remission12,13
    • Higher use of glucocorticoids14,15   

    To improve long-term patient outcomes, management should aim at remission of disease symptoms and signs, prevention of damage accrual, and minimization of drug side-effects.16

  • More than 60% of patients with SLE report that they were initially misdiagnosed.21 In fact, an accurate SLE diagnosis may take years.21,22 One challenge in diagnosing SLE that patients may face is that no single test exists to determine whether a person has SLE.23

    In addition, 52% of patients report that they minimize their symptoms when talking to physicians—72% of physicians are unaware that patients tend to underreport their symptoms.24

*SELENA-SLEDAI = Safety of Estrogens in Lupus Erythematosus: National Assessment Version of the Systemic Lupus Erythematosus Disease Activity Index.

†Data from the 2011 National Burden of Lupus survey was funded and developed by GSK. This survey included 957 people in the lupus community — 502 people who reported being diagnosed with SLE, 204 supporters (family members or friends) of people with lupus and 251 rheumatologists.

References:

  1. 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. http://www.ncbi.nlm.nih.gov/pubmed/10513791. Accessed February 6, 2020. 
  2. Nossent J, Kiss E, Rozman B, et al. Disease activity and damage accrual during the early disease course in a multinational inception cohort of patients with systemic lupus erythematosus. Lupus. 2010;19:949-56. http://dx.doi.org/10.1177/0961203310366572. Accessed February 6, 2020.
  3. Conti F, Ceccarelli F, Perricone C, et al. Flare, persistently active disease, and serologically active clinically quiescent disease in systemic lupus erythematosus: a 2-year follow-up study. PLoS One. 2012;7(9):e45934. https://doi.org/10.1371/journal.pone.0045934. Accessed February 6, 2020. 
  4. van Vollenhoven RF, Mosca M, Bertsias G, et al. Treat-to-target in systemic lupus erythematosus: recommendations from an international task force. Ann Rheum Dis. 2014;73(6):958-967. http://dx.doi.org/10.1136/annrheumdis-2013-205139. Accessed February 6, 2020. 
  5. Fernando MMA, Isenberg DA. How to monitor SLE in routine clinical practice. Ann Rheum Dis. 2005;64:524-527. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1755465/. Accessed February 6, 2020. 
  6. Brey RL, Holliday SL, Saklad AR, et al. Neuropsychiatric syndromes in lupus: prevalence using standardized definitions. Neurology. 2002;58(8):1214-1220. http://www.ncbi.nlm.nih.gov/pubmed/11971089. Accessed February 6, 2020. 
  7. 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. http://dx.doi.org/10.1093/aje/kws130. Accessed February 6, 2020. 
  8. Bastian HM, Roseman JM, McGwin G Jr, et al; for the LUMINA Study Group. Systemic lupus erythematosus in three ethnic groups. XII. Risk factors for lupus nephritis after diagnosis. Lupus. 2002;11(3):152-160. https://www.ncbi.nlm.nih.gov/pubmed/12004788. Accessed February 6, 2020. 
  9. Ramsey-Goldman R, Dunn JE, Huang C-F, et al. Frequency of fractures in women with systemic lupus erythematosus: comparison with United States population data. Arthritis Rheum. 1999;42(5):882-890. http://dx.doi.org/10.1002/1529-0131(199905)42:5%3C882::AID-ANR6%3E3.0.CO;2-C. Accessed February 6, 2020. 
  10. Hahn BH. Systemic lupus erythematosus. In: Fauci A, Braunwald E, Kasper DL, et al, eds. Harrison's Principles of Internal Medicine. 17th ed. New York, NY: McGraw Hill; 2008:2075-2083. 
  11. Ringold S, Lynm C, Golub RM. JAMA patient page. Systemic lupus erythematosus. JAMA. 2005;293(24):3130. https://www.ncbi.nlm.nih.gov/pubmed/21828332. Accessed February 6, 2020. 
  12. Kakati S, Teronpi R, Barman B. Frequency, pattern and determinants of flare in systemic lupus erythematosus: A study from North East India. The Egyptian Rheumatologist. 2015;37:S55–S59. http://doi.org/10.1016/j.ejr.2015.08.002. Accessed February 6, 2020. 
  13. Steiman AJ, et al. [abstract]. Frequency and characteristics of prolonged remission in systemic lupus erythematosus. Arthritis Rheum. 2011;63(Suppl 10):1388. https://www.rheumatology.org/Portals/0/Files/2011_abstract.pdf. Accessed February 6, 2020. 
  14. Thamer M, Herman MA, Zhang Y, et al. Prednisone, lupus activity, and permanent organ damage. J Rheumatol. 2009;36:560-64. http://dx.doi.org/10.3899/jrheum.080828. Accessed February 6, 2020. 
  15. Gladman DD, Urowitz MB, Rahman P, et al. Accrual of organ damage over time in patients with systemic lupus erythematosus. J Rheumatol. 2003;30:1955-59. http://www.jrheum.org/content/30/9/1955.abstract. Accessed February 6, 2020. 
  16. Fanouriakis A, Kostopoulou M, Alunno A, et al. 2019 update of the EULAR recommendations for the management of systemic lupus erythematosus. Ann Rheum Dis. 2019;78:736-745. http://dx.doi.org/10.1136/annrheumdis-2019-215089. Accessed March 11, 2020.
  17. Bombardier C, Gladman DD, Urowitz MB, Caron D, Chang CH. Derivation of the SLEDAI. A disease activity index for lupus patients. The Committee on Prognosis Studies in SLE. Arthritis Rheum. 1992 Jun;35(6):630-640. https://www.ncbi.nlm.nih.gov/pubmed/1599520. Accessed February 6, 2020. 
  18. Mikdashi J, Nived O. Measuring disease activity in adults with systemic lupus erythematosus: the challenges of administrative burden and responsiveness to patient concerns in clinical research. Art Res Ther. 2015;17:183. http://dx.doi.org/10.1186/s13075-015-0702-6. Accessed March 11, 2020.
  19. Petri M, et al. Classification and definition of major flares in SLE clinical trials. Lupus 1999;8:685-691. http://dx.doi.org/10.1191/096120399680411281. Accessed March 11, 2020.
  20. Hay EM, et al. The BILAG index: a reliable and valid instrument for measuring clinical disease activity in systemic lupus erythematosus. Q J Med. 1993;86:447-458. https://www.ncbi.nlm.nih.gov/pubmed/?term=Hay+EM%2C+et+al.+Q+J+Med.+1993%3B86%3A447-458. Accessed March 11, 2020.
  21. Lupus Foundation of America. UNVEIL Survey Fact Sheet. http://www.lupus.org/page/-/files/pdf/Unveil%20Survey%20Fact%20Sheet.pdf. Accessed February 6, 2020. 
  22. Alarcón GS, McGwin G Jr, Roseman JM, et al. Systemic lupus erythematosus in three ethnic groups. XIX. Natural history of the accrual of the American College of Rheumatology criteria prior to the occurrence of criteria diagnosis. Arthritis Rheum. 2004;51(4):609-615. http://dx.doi.org/10.1002/art.20548. Accessed February 6, 2020. 
  23. Lupus Research Institute. Diagnosis. https://www.lupusresearch.org/understanding-lupus/diagnosis-and-treatment/diagnosis/. Accessed February 6, 2020. 
  24. Lupus: A Survey Among SLE Patients, Physicians, and Supporters. New York, NY: GfK Roper Public Affairs & Corporate Communications; October 2011.