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Eye Health, Ocular Manifestations, & Lupus

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Lupus can cause damage to joints and organs throughout the body, including the eyes. Stay sight-safe by knowing potential complications.

Not all ocular complications are a result of lupus. Medications and other lupus treatments can also cause issues with various parts of the eye. Because of this, it is important to be aware of potential issues with the eyes when changing treatment plans.

Nearly 33% of people with lupus (SLE) report ocular complications, according to researchers. Not only are eye problems common, they may also be the initial sign of lupus or a sign of current disease activity. Regardless, you should speak with your lupus treatment team about eye problems as certain complications can lead to a loss of vision if they are untreated.


Understanding the eye

The eye is a very elegant organ… that’s very complicated and a lot more resilient than you think it is.” That quote comes from Dr. Sergio Schwartzman, a rheumatologist, during a presentation on lupus and eye problems at a Hospital for Special Surgery SLE Workshop.

During that presentation, Dr. Schwartzman highlighted that the eye is an “immune privileged” organ. Immune privileged organs are protected from the body’s immune system. This means that the immune system will not generate a response (typically inflammation) even if there are antigens or antibodies present that could serve as triggers.

Only a few parts of the human body are thought to have this rare functionality. They include the:

  • eyes
  • brain
  • placenta and fetus
  • testicles

Why is immune privilege beneficial? Minimizing inflammation may be a way that the organs protect themselves. The listed organs can play a critical role in survival.

In autoimmune diseases like lupus, the immune response may be strong enough to override this inflammation protection. This is one of the ways where the eye may be at risk for problems as a result of lupus.


Common eye problems associated with lupus

Dry eye syndrome (keratoconjunctivitis sicca) / Sjogren’s syndrome

Prevalence: Roughly 33% of people with SLE will experience dry eye syndrome, according to some research. The Lupus Foundation of America notes that roughly “20% of people with lupus also have secondary Sjogren’s syndrome.

Symptoms: Typically mild and include irritation of the eyes, redness, blurred vision, and/or scratchy eyes. However, pain and loss of vision may also occur.

Treatment: Lubricating eyedrops may be useful. Severe instances may require punctual occlusion (plugging the tear drainage areas in the eyeball so tears remain in the eyes longer).


Retinal vasculitis

Prevalence: This is quite common with some research suggesting it may occur in 10% of people with lupus. Other research suggests that it may be as high as 28% of people that are hospitalized for lupus-related issues.

Cause: Blood supply is limited to the retina. The eye forms new blood vessels in an attempt to get more blood to the organ. But, these new vessels can be created in areas of the eye that impair vision, or there can be bleeding in the eye.

Symptoms: Decreased vision – though it can range from mild to severe. In cases of severe retinal vascular disease, it is possible to lose vision permanently. Additionally, people with lupus may experience involuntary eye movement or double vision.

Treatment: Systemic steroids and anticoagulant medications may be used to treat retinal vasculitis.


Nerve damage (neuro-ophthalmic damage)

Prevalence: Optic nerve involvement occurs in around 1% of people with lupus.

Symptoms: Unilateral loss of vision and pain that is worse when moving the eyes. Additionally, you may experience decreased pupil reflexes and droopy eyelids.

When the visual nerve fibers are damaged, a person may experience hallucinations and a loss of peripheral and/or central vision.


Discoid lupus

Discoid lupus, a form of cutaneous lupus, is the type of lupus that affects the skin. This includes the skin of the eyelids, and may result in the loss of eyelashes.

Symptoms: Skin lesions are raised, slightly scaly, and mis-formed. They may scar.



Prevalence: Very uncommon among people with lupus.The Lupus Foundation of America notes that this may occur in 1% of people with lupus and “may be the first sign of the disease.” However, scleritis is common in people with rheumatoid arthritis (RA).

Symptoms: The sclera (the white part of the eyeball) becomes discolored and looks yellow. It is also painful.


Other inflammation

Additionally, inflammation is possible throughout the eye including the:

  • eyelids
  • conjunctiva
  • iris
  • retina
  • choroids

This inflammation may cause discomfort, redness, or other symptoms. As with all of the previous complications, you should speak with your lupus treatment team if you experience changes to your vision.


The eyes, medications, & lupus

Immunosuppressant medications, antimalarials, and steroids, which are prescribed to help battle lupus, can all cause eye problems. Because of this, yearly eye examinations are recommended by the American Optometric Association, particularly for anyone taking Plaquenil. Additionally, people starting Plaquenil should get a baseline eye exam before starting (or shortly after starting) the medication.


Take away

Co-morbidities are nothing new for Lupus Warriors. Being vigilant and expressing any new symptoms to your rheumatologists, ophthalmologist, or other members of your lupus treatment team is crucial to maintain eye health.

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