Have you ever awakened feeling like you’ve been scratched or poked in the eye or had swollen eyes that made it hard to see? If you have lupus, your eye problems may be caused by this autoimmune disease or its treatment.

Lupus is a chronic disease in which the body’s immune system attacks its own tissues, leading to inflammation and damage. Lupus can affect many parts of the body, including the blood vessels, joints, skin, lungs, heart, kidneys, brain, and nerves — and your eyes. According to a 2022 research review, up to a third of people with systemic lupus erythematosus (SLE) — the most common type of lupus — have some sort of ocular manifestation (an eye condition related to another disease).

Often, eye problems coincide with a flare-up, and sometimes they occur before other lupus symptoms appear. Therefore, getting eye problems checked out by an ophthalmologist (eye doctor) can be very important for early diagnosis and treatment of lupus.

Eye problems caused by lupus are fairly common. Symptoms can range from mild to severe, including:

• A scratchy, gritty feeling
• Blurred vision
• Watery eyes
• Bulging eyes
• Partial vision loss

In some cases, vision can be permanently damaged. Symptoms can affect any part of the eye, including the lids, retina, sclera (white outer layer), and nerves, and they can also be caused by medications to treat lupus. Below, we describe seven eye conditions you might experience if you have lupus.

1. Eyelid Rash

Rashes typically seen on other parts of the body in people with lupus can also appear on the eyelids. This symptom is related to discoid lupus erythematosus, a type of cutaneous lupus (lupus that affects the skin). The rash consists of scaly, slightly raised plaques, which can be itchy or cause a burning sensation and may lead to scarring and loss of eyelashes. Treatment includes corticosteroids applied topically (to skin) and antimalarial drugs taken orally (by mouth).

2. Dry Eye Syndrome

Dry eye disease, also known as keratoconjunctivitis sicca, affects about 16 percent of people with SLE. Dry eyes can also occur with Sjögren’s syndrome, another autoimmune condition that may affect people with lupus.

Dry eye symptoms include:

• An irritated, scratchy, or burning sensation
• The feeling of sand in the eyes
• Redness
• Wateriness
• Blurred vision
• Sensitivity to light

Severe dry eye disease can lead to inflammation and damage to the eye surface. Sometimes, tear ducts can plug and prevent tears from draining.

Dry eye symptoms caused by lupus are usually treated with artificial tears (in liquid or gel form) to increase moisture and relieve pain or discomfort. Your eye doctor also may prescribe eye drops such as cyclosporine ophthalmic (sold as Restasis or Cequa) to rev up tear production. Topical steroids or antibiotics might also be part of treatment.

3. Retinal Disease

Diseases of the retina, the light-sensitive tissue of the eye, are common among people with active SLE. For example, lupus retinopathy (damage to blood vessels in the retinal) is found in about 10 percent of people with active SLE, according to the 2022 review. The authors note that incidence of retinopathy was much higher before lupus treatments such as steroids and drugs to suppress the immune system came into widespread use.

Retinal problems are often related to how well SLE is controlled — if lupus control is good, retinal problems are less likely. It’s important to seek prompt treatment for eye problems and any other developing or worsening lupus symptoms.

Some forms of retinal disease don’t produce symptoms, and most cases are mild. The main signs are tiny white spots (called cotton wool spots) and small areas of bleeding from the blood vessels of the retina. Severe cases, however, can result in loss of vision or other significant problems.

Vasculitis of the Retina

About 3 percent to 28 percent of people with lupus experience vasculitis (inflammation of the blood vessels) in the retina. This condition occurs when the blood supply to the retina becomes blocked. Severe cases are often associated with active lupus, especially central nervous system lupus.

Vasculitis can lead to decreased vision and sometimes a loss of center of vision. Double vision can occur if vasculitis affects the nerves controlling eye movement. See your eye doctor right away if you notice even a partial vision loss. Treatment usually involves oral steroids and other immunosuppressive medications. Corticosteroid injections may be used, and blood thinners and low-dose aspirin may be helpful.

4. Scleritis

Found in up to 2.4 percent of people with lupus, according to Lupus UK, scleritis is a condition in which the eye’s sclera becomes inflamed. Sometimes this is the first noticeable symptom of lupus, indicating an underlying disease needs to be diagnosed and treated. “In the past I have had a lot of swelling in my left eye but didn’t know the reason. Only realized when diagnosed in 2014 that it was lupus related,” one MyLupusTeam member shared.

The main symptoms of scleritis include:

• Eye pain severe enough to awaken you
• Yellowing of the whites of the eyes
• Redness
• Tenderness to touch
• Blurred vision
• Bulging, swollen eyes
• Limited eye movement

See an ophthalmologist right away if you notice severe symptoms of scleritis, which can result in loss of vision.

Mild scleritis is treated with oral nonsteroidal anti-inflammatory drugs (NSAIDs). Severe scleritis may require oral corticosteroids and other immunosuppressant drugs, such as methylprednisolone and cyclophosphamide for resistant cases.

5. Uveitis

Although rare, uveitis — inflammation of the uvea (the eye’s middle layer) — can occur in about 0.1 percent to 4.8 percent of people with lupus. The symptoms of uveitis include sensitivity to light, pain, and blurred vision, which are usually treated with eye drops.

6. Eye Infection

Having SLE itself increases the chance of infections — plus, SLE treatment often involves immunosuppressive medications. Therefore, the most dangerous complications for people with SLE are eye infections, which need an ophthalmologist’s care right away. The most common infections of the eye are caused by viruses, such as cytomegalovirus, herpes simplex virus, and varicella-zoster virus. Bacterial infections are usually treated with topical or oral antibiotics.

7. Treatment-Associated Eye Problems

Steroids and antimalarial drugs that are used to treat lupus can have side effects that affect the eyes.

Steroids

Steroids, often used to treat inflammation in people with lupus, can lead to eye problems. Eye problems caused by long-term use of steroids include:

• High pressure inside the eye (seen in 31 percent of people with lupus, per the Lupus Foundation)
• Glaucoma and cataracts
• Increased risk of infections
• Thinning of tissues
• Delayed wound healing on the surface of the eye

Antimalarials

Hydroxychloroquine (Plaquenil) is an antimalarial medication frequently used to treat SLE. However, long-term use can damage the retina, a risk that increases the longer you take the drug.

According to findings published in the journal Eye, about 7.5 percent of people taking hydroxychloroquine for more than five years experienced related eye problems, and after 20 years of treatment, nearly 20 percent had retinal damage.

Hydroxychloroquine can cause permanent damage to the eye for people who:

• Take more than the recommended limit of 400 milligrams a day
• Use hydroxychloroquine for longer than five years
• Have reduced kidney and lung function
• Are of a higher weight
• Are older than age 60
• Have a history of retinal disease
• Take other medications that can damage the retina, such as tamoxifen

The symptoms of eye problems caused by hydroxychloroquine include central vision loss and decreased night vision.

The American Optometric Association recommends annual comprehensive eye exams for people using hydroxychloroquine. You should undergo a baseline exam before starting the drug, and your eye doctor should monitor vision changes closely, especially if you’re a long-term hydroxychloroquine user taking high doses. Treatment will need to be stopped if you develop signs of retinal damage.

One member emphasized the importance of regular checkups with an eye doctor: “I have an appointment with a retinologist every six months to check for problems and changes. I am on chloroquine (an antimalarial drug). I have developed floaters in both eyes.”

Be sure to visit your eye doctor regularly, and let them know right away if you develop eye problems. By working together with all members of your health care team, you can have your best quality of life while living with lupus.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Have you experienced eye problems caused by lupus? Share your experience in the comments below, or start a conversation by posting on MyLupusTeam.