Lupus is a chronic autoimmune disease which affects the body's ability to differentiate between normal cells and foreign invaders such as bacteria and viruses. As a result, those with lupus often times experience symptoms of inflammation, swelling and damage to the joints and other organ systems—many of which can be brought on by light. And some even experience symptoms of photophobia or sensitivity to light, among other eye-related symptoms.
Photophobia and Eye Symptoms of Lupus
There is no clear understanding of exactly how many people with lupus have ocular or neurological sensitivity to light, but many—perhaps up to one-third of all patients—experience eye-specific symptoms, which may contribute to the onset of light-related sensitivities.1 For example, skin or muscle changes around the eye, lesions, visual floaters, dry eyes, inflammation and retinal changes are all side effects of lupus that can contribute to a person’s photophobic responses.2,3 And the pain from photophobia can be severe for those who must endure it:
"I have photophobia, it's difficult if not impossible to live with. If I get prolonged exposure to light, i.e. natural light or room light, or night driving light etc, I get a type of panic attack, I feel desperate to close my eyes and when it's severe I'm equally desperate to shut my burning eyes and can sleep soundly for several hours."
Secondary Conditions Can Also Lead to Light Sensitivity
Many of those with lupus also have secondary or comorbid disorders which may make them more prone to ocular light sensitivity or photophobia.
Dry eyes are the most frequent ocular symptom of lupus, and it often manifests as a result of comorbid Sjogren’s Syndrome, an immune system disorder.4,5 Whether it is part of Sjogren’s Syndrome or not, dry eyes are the leading cause of light sensitivity among patients. Read more about dry eye and light sensitivity here.
*Migraine and Headache Disorders
Migraine and other recurring headaches commonly affect those with lupus, with estimates anywhere between 40% to 75% of patients experiencing these neurological effects.1,6 There is still question over whether a “lupus headache” differs from a migraine or any other primary headache as evidence shows they may have unique presentations. Regardless, we know that the presence of regular migraine attacks or headaches comes with an inherent risk for photophobia.
Scleritis is a condition of the eye in which the whites of the eyes become inflamed and inflamed. Nearly one percent of those with lupus will experience scleritis which can lead to symptoms of light sensitivity. Less common are issues like conjunctivitis (pink eye) and iritis (pupil inflammation), but they have been reported by those with lupus.
*Anxiety and mood disorders
Research suggests that a high percentage of lupus patients (particularly women) have self-reported anxiety, mood or panic disorders—all of which have also been linked to light sensitivity.7 In addition, the mere presence of a chronic disorder like lupus, especially if accompanied by comorbid migraine, is likely to bring on anxiety and other emotional problems.
Light Sensitivity and Lupus Medications
Certain medications used to treat lupus may also exacerbate light sensitivity, such as plaquenlil (also known as hydroxychloroquine).2 Oftentimes, these are rare side effects and should not deter you from appropriate treatment, but it is important to be aware of what might result from their usage.
How Photosensitivity Differs for Lupus
It is important to distinguish photophobia from photosensitivity, the latter being one of the hallmark symptoms of lupus. Photophobia, as noted above, generally describes an aversion to or avoidance of light and is often used to describe how the eye absorbs and transmits light wavelengths to the brain. Photosensitivity, on the other hand primarily refers to skin sensitivity to light.
In addition to those symptoms of light sensitivity affecting the eyes, nearly two thirds of those with lupus experience these photosensitive reactions to sunlight or other ultraviolet light sources. Lupus photosensitivity may result in skin rashes commonly over the nose and cheeks, hives and/or a flare in joint pain, fever and inflammation. Exposure to indoor compact fluorescent lamps, or CFL’s may trigger photosensitivity in those with lupus due to their high ultraviolet ray emission.8,9
1Read RW. Clinical mini-review: systemic lupus erythematosus and the eye. Ocul Immunol Inflamm. 2004 Jun;12(2):87-99.
2Shoughy SS, Tabbara KF. Ocular findings in systemic lupus erythematosus. Saudi Journal of Ophthalmology. 2016;30(2):117-121. doi:10.1016/j.sjopt.2016.02.001.
3Palejwala NV, Walia HS, Yeh S. Ocular Manifestations of Systemic Lupus Erythematosus: A Review of the Literature. Autoimmune Diseases. 2012;2012:290898. doi:10.1155/2012/290898.
4Taşdemir M, Hasan C, Ağbaş A, et al. Sjögren’s syndrome associated with systemic lupus erythematosus. Turkish Archives of Pediatrics/Türk Pediatri Arşivi. 2016;51(3):166-168. doi:10.5152/TurkPediatriArs.2016.2001.
5Baer AN1, Maynard JW, Shaikh F, Magder LS, Petri M. Secondary Sjogren's syndrome in systemic lupus erythematosus defines a distinct disease subset. J Rheumatol. 2010 Jun;37(6):1143-9. doi: 10.3899/jrheum.090804. Epub 2010 Apr 1.
6Glanz BI, Venkatesan A, Schur PH, Lew RA, Khoshbin S. Prevalence of migraine in patients with systemic lupus erythematosus. Headache. 2001 Mar;41(3):285-9.
7Bachen EA, Chesney MA, Criswell LA. Prevalence of mood and anxiety disorders in women with systemic lupus erythematosus. Arthritis and rheumatism. 2009;61(6):822-829. doi:10.1002/art.24519.
8Foering, K et al. Characterization of clinical photosensitivity in cutaneous lupus erythematosus. Journal of the American Academy of Dermatology , Volume 69 , Issue 2 , 205 - 213.
9Wysenbeek AJ, Block DA, Fries JF. Prevalence and expression of photosensitivity in systemic lupus erythematosus. Annals of the Rheumatic Diseases. 1989;48(6):461-463.