What is Lupus? Lupus Awareness, Symptoms and Diagnosis
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What is Lupus?
While systemic lupus erythematosus (better known as lupus) has been researched for years, the catalyst remains unknown (Healthdirect, 2016; NIH, 2014). It is believed that genetics, stress, injury and illness all contribute to the development of lupus (Better Health Channel, n. d.).
October is Lupus Awareness Month
What is known is that lupus is a chronic autoimmune disease (Healthdirect, 2016); meaning, that for people with lupus, their immune system attacks their healthy cells and tissues and not just foreign bodies/invaders (NIH, 2014). Evidently, this can lead to bodily damage. In the most common form of lupus, SLE (systemic lupus erythematosus), nearly all parts of the body can be affected (Healthdirect, 2016).
Discoid lupus is referred to as being more ‘mild’ as it namely affects just the skin (Heathdirect, 2016), for example causing an ongoing skin rash (NIH, 2014). There are other versions of lupus also, such as a drug-induced version (NIH, 2014).
Nearly all people that are affected by lupus are female (90%), and commonly aged 15-45yrs (Healthdirect, 2016).
- Joint pain, stiffness, and swelling
- Skin rashes
- Swollen glands
- Muscular pain
- Loss of hair
- Mouth ulcers
- Sun sensitivity
- Fingers and/or toes may appear pale or purple
- ‘chest pain when taking a deep breath’
- Less commonly: anaemia, headaches, dizziness, seizures, sadness, confusion
(NIH 2014; Healthdirect 2016)
The NIH: National Institute of Arthritis and Musculoskeletal and Skin Diseases (2014) suggests that the symptoms may vary dependent on the type of lupus and the person. Symptoms tend to ‘come and go’, ‘flare’ from mild to severe intensity, and new symptoms of lupus can arise at any stage (NIH, 2014). Better Health Channel (n. d.) state that lupus may even become life-threatening, for example, should it damage major organs such as the kidneys or brain.
- Lupus is troublesome to diagnose as it is variable and symptoms may align with other health conditions
- Physical examination of symptoms can help with diagnosis
- Blood testing for inflammation and certain antibodies also helps to diagnose lupus
- Attaining a thorough medical and surgical history is evidently important for correct diagnosis
- Early diagnosis is important to prevent further bodily damage
- Noting flares and remission may also be relevant to diagnosis
- NIH (2014) also states that skin and/or kidney biopsies can assist with diagnosis
(Better Health Channel, n. d.)
What may be the prognosis?
- Healthdirect (2016) suggest that most people that have lupus are able to achieve a good quality of life from managing the disease with healthy lifestyle behaviours and adherence to treatment
- Early treatment likely prevents complications (Better Health Channel, n. d.)
- Various medications may assist with managing lupus (Better Health Channel, n. d.), for example, analgesics for pain or corticosteroids for inflammation.
How can clients improve the self-management of lupus?
- Health education
- Understanding triggers for flares and remission
- Making informed decisions about care
- Implement sun safety (e.g. sunscreen, hat etc) as ultraviolet (UV) light can trigger flares
- Regular exercise
- Reduce/manage stress (stress can exacerbate lupus symptoms)
- Use relaxation techniques
- Healthy diet
- Balance rest and activity
- Continue work/occupation
- Promptly seek help or support from relevant health and medical professionals, especially if any concerns or changes arise
- Lupus peer support groups may offer some additional support
- Specialist health professionals may be sources of help specific to the needs of the person with lupus (e.g. dermatologist for skin issues; psychologist for stress or sadness etc.)
- MOVE muscle, bone & joint health. National Help Line Tel. (03) 8531 8000 or 1800 263 265
- Restrict time exposed to fluorescent or halogen light
- Ensure that goals set are realistic and manageable
- Call and book a visit to the relevant health professional (e.g. general practitioner, nurse, specialist medical practitioner) if warning signs of a flare arise
- People with lupus may wish to seek counselling for extra support
(Better Health Channel n. d.; The Office on Women’s Health 2017)
Treatment can also involve:
- Preventing flares from developing
- Management of a flare
- Prevent complications such as damage to major organs
- Improve comfort and decrease pain/swelling
- Promote immune system function and health
- Achieving hormonal balance
- Learn patterns and specific symptoms that come on before a flare (e.g. dizziness)
- Regularly visit the doctor
- Create a support system
- Increase coping skills
- Centers for Disease Control and Prevention (CDC) (2017) report that ‘SLE treatment consists primarily of drugs that inhibit or prevent activity of the immune system (e.g., hydroxychloroquine and corticosteroids [prednisone]). In 2011, the FDA approved belimumab, the first new drug for SLE in more than 50 years.’
What are some of the focus areas for lupus research (NIH, 2014)?
- Genetic susceptibility
- Biomarkers for lupus and associated flares
- Lupus disease processes
- Treatments (e.g. the medication called rituximab)
- Best strategies for improving adherence to treatments
An interesting study by Roberts et al. (2017) concluded that psychosocial trauma and stress responses could lead to the development of autoimmune diseases. The study found that exposure to trauma was greatly connected to instances of SLE.
A separate study by Fernández-Nebro et al. (2015) found that people (Spanish patients) with SLE were linked to a high rate of premature cardiovascular disease. Fernández-Nebro et al. reported that they believe their study uniquely identifies a link between diabetes and cardiovascular events for people with SLE.
- Better Health Channel n. d., Lupus, Better Health Channel, Victorian Government, viewed 22 September 2017, https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/lupus
- Centers for Disease Control and Prevention 2017, Lupus basic factsheet, CDC, viewed 22 September 2017, https://www.cdc.gov/lupus/basics/index.html
- The Department of Health 2017, Calendar of events, Australian Government, viewed 22 September 2017, http://www.health.gov.au/calendar
- Fernández-Nebro A, Rúa-Figueroa Í, López-Longo FJ, Galindo-Izquierdo M, Calvo-Alén J, Olivé-Marqués A, Ordóñez-Cañizares C, Martín-Martínez MA, Blanco R, Melero-González R, Ibáñez-Rúan J, Bernal-Vidal JA, Tomero-Muriel E, Uriarte-Isacelaya E, Horcada-Rubio L, Freire-González M, Narváez J, Boteanu AL, Santos-Soler G, Andreu JL, Pego-Reigosa JM 2015, ‘Cardiovascular Events in Systemic Lupus Erythematosus: A Nationwide Study in Spain From the RELESSER Registry’, EAS-SER (Systemic Diseases Study Group of Spanish Society of Rheumatology). Medicine (Baltimore), vol. 94, no. 29, viewed 22 September 2017, https://www.ncbi.nlm.nih.gov/pubmed/26200625
- Healthdirect 2016, Lupus, Healthdirect Australia, viewed 22 September 2017, https://www.healthdirect.gov.au/lupus
- National Institute of Arthritis and Musculoskeletal and Skin Diseases 2014, Systemic Lupus Erythematosus (Lupus), NIH, viewed 22 September 2017, https://www.niams.nih.gov/health_info/lupus/lupus_ff.asp
- The Office on Women’s Health 2017, Living with lupus, viewed 22 September 2017, https://www.womenshealth.gov/lupus/living-lupus#1
- Roberts AL, Malspeis S, Kubzansky LD, Feldman CH, Chang SC, Koenen KC, Costenbader KH 2017, ‘Association of trauma and posttraumatic stress disorder with incident systemic lupus erythematosus (SLE) in a longitudinal cohort of women’, Arthritis Rheumatol, viewed 22 September 2017, https://www.ncbi.nlm.nih.gov/pubmed/28929625
Author Madeline Gilkes
Madeline Gilkes, CNS, RN, is a Fellow of the Australasian Society of Lifestyle Medicine. She focussed her master of healthcare leadership research project on health coaching for long-term weight loss in obese adults. In recent years, Madeline has found a passion for preventative nursing, transitioning from leadership roles (CNS Gerontology & Education, Clinical Facilitator) in hospital settings to primary healthcare nursing. Madeline’s vision is to implement lifestyle medicine to prevent and treat chronic conditions. She is planning to complete a PhD in health education, and currently works mostly in the role of Head of Nursing. Madeline’s philosophy focuses on using humanistic management, adult learning theories/evidence and self-efficacy theories and interventions to promote positive learning environments. In addition to her master of healthcare leadership, Madeline has a graduate certificate in adult and vocational education, graduate certificate of aged care nursing, and a bachelor of nursing. Madeline is currently nearing completion of a graduate certificate of diabetes education and management. See Educator Profile