Lupus Blog & Current Events

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Systemic Lupus Erythematosus (SLE) is an autoimmune disease where the immune system starts attacking its own tissues. Currently, there are no known causes or cures for the disease, just treatments to manage lupus. Symptoms of lupus include skin rash, fever, pain/swelling in joints, etc.¹ Recently, studies have also identified sleep disturbance as one of the more common symptoms, occurring in around 50%-80% of people living with SLE.²

So, what exactly is sleep disturbance? Generally, people who suffer from sleep disturbance take longer to fall asleep (long sleep latency) and wake up more frequently during the middle of the night (high sleep fragmentation). Sleep disturbance can lead to an array of health problems. To list a few, a lack of sleep results in daytime fatigue and impairs immune cell functions, making people more likely to get sick. Similarly, vaccines (including COVID vaccines) are also less effective if one doesn't get enough sleep.³ For many individuals, sleep deprivation can also contribute to depression.⁴

For people living with SLE, multiple research studies have indicated that the impact of sleep disturbance is significantly more pronounced. Broad estimates suggest that 81% of lupus patients experience fatigue that negatively affects their life and 61% of them report not feeling recharged after their sleep.⁵ Unfortunately, having enough sleep is crucial to preventing lupus flare in patients. For most people, enough sleep means at least 7 hours.⁵ A positive loop happens. Lupus flares cause a higher level of sleep disturbance, and sleep disturbance then worsens the lupus flare, which further impacts the patient’s physical and psychological well-being. 

Pain from lupus flares, underlying mood disorders, and/or stress can contribute to sleep disturbances. Created with Biorender.com

While the cause of sleep disturbance in SLE patients is unclear, pain from lupus flares,  underlying mood disorders, and/or stress may be the root of the problem.⁶ Another study that followed relatives of SLE patients found that less than 7 hours of sleep at night correlated with the development of SLE.⁶ Research has also shown that common SLE treatments, such as hydroxychloroquine (HCQ) and belimumab, can lead to increased fatigue and sleep disturbances. A study done in March 2017 showed a close relationship between the administration of HCQ and the presence of psychomotor agitation, or moving without purpose such as toe tapping or pacing, in patients.⁷ Psychomotor agitation is directly connected to the reduced quality of rest and feelings of anxiety and restlessness. Furthermore, a study done in April 2012, analyzed the condition of two SLE patient groups treated with belimumab infusions bi-weekly. After 52 weeks of treatment, an evaluation of the patients found psychiatric adverse effects in approximately 10-20% of both groups.⁸ The most common of these effects were depression, insomnia, and anxiety, all of which contribute to sleep disturbance. However, it is important to consider a follow-up study done in June 2019 showed a significant decrease of these adverse effects through long-term belimumab infusion treatment.⁹

Given that lupus increases susceptibility to sleep disturbance, it is especially important for people living with SLE to develop good sleeping habits in order to maximize their body’s rest. Studies have shown that fresh blankets and pillows, a comfortable bedtime routine, and daily exercise can all contribute to a better night’s rest.¹⁰ Additionally, it is recommended to reduce your consumption of alcohol, as it can hinder high-quality, restful sleep. It is vital that people living with SLE practice these habits along with getting 7-9 hours of sleep (a little more for children) in order to prevent lupus flares, limit fatigue, and keep the body’s mechanisms healthy, especially the immune system.

References:

1. Systemic lupus erythematosus (SLE). (2022, July 05). Retrieved August 22, 2022, from https://www.cdc.gov/lupus/facts/detailed.html
2. Sleep disorders and systemic lupus erythematosus. (n.d.). Retrieved August 22, 2022, from https://journals.sagepub.com/doi/10.1177/0961203313518623
3. Haspel, J., Anafi, R., Brown, M., Cermakian, N., Depner, C., Desplats, P., . . . Solt, L. (2020, January 16). Perfect timing: Circadian rhythms, sleep, and immunity - an NIH workshop summary. Retrieved August 22, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7030790/ 
4. Young, K. A., Munroe, M. E., Harley, J. B., Guthridge, J. M., Kamen, D. L., Gilkensen, G. S., Weisman, M. H., Karp, D. R., Wallace, D. J., James, J. A., & Norris, J. M. (2018, August). Less than 7 hours of sleep per night is associated with transitioning to systemic lupus erythematosus. Lupus. Retrieved August 26, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6026567/ 
5. Harrison, M. (n.d.). The cycle of lupus-related fatigue and "Brain fog": HSS. Retrieved August 22, 2022, from https://www.hss.edu/conditions_lupus-fatigue-cognitive-dysfunction.asp 
6. Gudbjörnsson B, Hetta J. Sleep disturbances in patients with systemic lupus erythematosus: a questionnaire-based study. Clin Exp Rheumatol. 2001 Sep-Oct;19(5):509-14. PMID: 11579709. 
7. Manzo, C., Gareri, P., & Castagna, A. (2017, March 04). Psychomotor agitation following treatment with hydroxychloroquine - drug safety - case reports. Retrieved August 22, 2022, from https://link.springer.com/article/10.1007/s40800-017-0048-x
8. Lamore, R., Parmar, S., Patel, K., & Hilas, O. (2012, April). Belimumab (benlysta): A breakthrough therapy for systemic lupus erythematosus. Retrieved August 22, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3351861/
9. Strand, V., Berry, P., Lin, X., Asukai, Y., Punwaney, R., & Ramachandran, S. (2019, June). Long-term impact of belimumab on health-related quality of life and fatigue in patients with systemic lupus erythematosus: Six years of treatment. Retrieved August 22, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6593666/
10. Sleep better when you have lupus. (n.d.). Retrieved August 22, 2022, from https://www.lupus.org/resources/ways-to-get-better-sleep-when-you-have-lupus