Have you ever wondered how lupus might secretly impact your eyesight? Most people know lupus can attack the joints, skin, and major organs like the kidneys. However, many do not realize that lupus inflammation can attack the eyes. And that isn’t all—lupus treatments like steroids and hydroxychloroquine can potentially cause eye damage. Fortunately, with proper lupus management and getting the correct eye tests done, it is rare to have vision affected by lupus or its treatments.
There are many things you can do to prevent eye problems. Find out in my article here and at the links I provide.
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NOTE: Johns Hopkins University Press, publisher of The Lupus Encyclopedia, is a nonprofit publisher. If you purchase JHUP books, like The Lupus Encyclopedia, you support projects like Project MUSE.
Lupus can affect eye health, ranging from mild symptoms to severe complications. Eye problem symptoms may include dry eyes, sensitivity to light, blurred vision, double vision, and eye pain. These symptoms can vary in intensity and may come and go over time. If you ever get eye symptoms, see your eye doctor immediately to get a correct diagnosis and treatment plan.
Common Lupus Eye Problems
The most common eye problem in SLE patients is dry eye disease from Sjogren’s disease. Symptoms can include blurred vision, eye pain, and feeling like a foreign object is in the eye.
Lupus inflammation can affect any part of the eye. Going from the front of the eye to the back of the eye, potential problems of various eye structures include:
Eyelids: blepharitis, Meibomian gland dysfunction
Cornea: keratoconus, keratoconjunctivitis sicca from dry eyes
Lacrimal (tear) gland: lacrimal gland hypertrophy from Sjogren’s
We’ll pick one of these to talk about. Uveitis is inflammation of the uvea, the eye’s middle layer. Uveitis can cause redness, pain, and decreased vision and requires prompt medical attention to prevent complications. In severe cases, undertreated uveitis can lead to permanent vision, highlighting the importance of early detection and intervention.
Dry eyes (often due to Sjögen’s disease) is a much more common cause of redness, pain, and decreased vision. It is treated using artificial tears, anti-inflammatory eye drops (like cyclosporine or Restasis), punctal plugs, and keeping humidifiers active throughout the home.
However, since uveitis can potentially cause irreversible vision problems, I ask my patients to see their eye doctor immediately if these symptoms (eye redness, pain, and vision changes) occur so that a proper diagnosis and treatment plan is determined as soon as possible.
“I’m afraid of hydroxychloroquine eye damage.”
Eye Tests Needed While Taking Hydroxychloroquine and Chloroquine
Don’t be afraid of hydroxychloroquine and the eyes. If you get your two to three hydroxychloroquine eye tests yearly, vision problems should never occur. The eye doctor would see problems before you would ever notice anything. Be proactive and ensure you get a VF 10-2 and an SD-OCT yearly. Please show this to your eye doctor to ensure they have the proper machinery in their office. Many eye doctors do not have the appropriate testing equipment.
People with Asian ancestry should also get a third eye exam yearly: either a VF 24-2 or VF 30-2.
Chloroquine has a higher risk of causing eye problems than does hydroxychloroquine. When taking chloroquine, you should be diligent when getting your yearly eye exams. Some doctors even recommend exams every six months if taking chloroquine.
People should be much more concerned with steroids than with hydroxychloroquine. Steroids, like prednisone, significantly increase the risk of cataracts, even when taken at low doses. Cataracts are a problem where the clear lens of the eye becomes cloudy. Your eye doctor will look into this problem during hydroxychloroquine eye tests. When vision is impaired from cataracts, lens replacement surgery may be needed.
Since lupus can potentially affect all parts of the eye, from the eyelids and cornea (the clear part of the eye) back to the rear of the eye (like the retina and eye socket, I go into great detail about these possible problems in “The Lupus Encyclopedia: A Comprehensive Guide for Patients and Health Care Providers, edition 2.”
Here is an excerpt from the book. These are sections regarding the eyelids and the tear glands:
Eyelids (excerpt from The Lupus Encyclopedia)
The eyelids are folds of skin above and below the eye. Their primary purpose is to protect the eye. While the outer part of the eyelids is covered with very thin skin, the underparts have a moist surface called the conjunctiva, similar to the wet surfaces inside the mouth, nose, and vagina.
Periorbital is the skin around the eyes, including the eyelids. Periorbital edema is a condition in which the skin around the eyes, including the eyelids, swells and becomes puffy. This occurs in around 5% of SLE patients. One potential cause of periorbital edema is angioedema. Angioedema can occur due to SLE, genetic disorders, or allergic reactions (see chapter 8). Another potential cause is nephrotic syndrome (chapter 12).
The outer surface of the eyelids is skin. Cutaneous lupus, especially discoid lupus erythematosus (DLE), can affect the eyelids. DLE of the eyelid (also called periorbital DLE) occurs in 6% of SLE patients. If it occurs by itself, with no other DLE lesions, it can be hard to diagnose. The typical appearance of scaly redness of the eyelid is similar to that of other problems, such as blepharitis (below), psoriasis, and eczema. Incorrect treatment due to an initial misdiagnosis can result in permanent eyelid damage. For example, if periorbital DLE is not treated properly, it can leave permanent pigment changes that can cause cosmetic concerns.
A much more common eyelid problem in SLE is blepharitis (blephar- from the Greek for “eyelid, and -itis for “inflammation of”). Blepharitis causes tenderness, redness, and swelling of the eyelid, as well as blurry vision, a foreign body sensation in the eye, and itchiness. In SLE patients, it is most commonly due to dry eye from Sjögren’s overlap (chapter 14).
Lacrimal Gland (Tear Gland excerpt from The Lupus Encyclopedia)
The lacrimal tear gland is in the upper, outer part of the eyeball, closest to the ear. If you look in a mirror, pull up on the upper outer eyelid, and shine a bright light (use your smartphone flashlight), you can see it. It is a whitish, yellow area sitting behind the pink, moist skin next to the upper outer eyeball. SLE patients with Sjogren’s can develop inflammation lacrimal gland inflammation. This can lead to swelling of the gland and decreased production of tears and dry eyes (chapter 14).
Other eye structures covered in The Lupus Encyclopedia include the sclera, lens, retina, optic nerve, and the eye socket behind the eye.
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Complications Associated with Lupus and Vision
Lupus-related eye problems can lead to vision-threatening complications if not promptly diagnosed and treated. These complications may include retinal vasculitis, optic neuritis, and keratitis, all of which can lead to permanent vision loss if left untreated. Eye complications can significantly impact an individual’s quality of life, affecting daily activities, work, and overall well-being.
Impact on Quality of Life
In severe cases, lupus-related eye complications can significantly impact an individual’s quality of life, affecting daily activities, work, and overall well-being. Early detection and appropriate management are essential for preserving vision and maintaining a good quality of life for individuals with lupus.
Managing Lupus Eye Involvement
Medical Treatment Options
Treatment for lupus-related eye problems typically involves a combination of medications. This may include medications such as hydroxychloroquine, biologics (like Benlysta and Saphnelo), corticosteroids, immunosuppressants (like methotrexate), artificial tears, and other eye drops. Sometimes, eye drops or ointments may be prescribed to alleviate symptoms. Regular eye examinations are crucial for individuals with lupus to monitor for changes and detect complications early.
Importance of Regular Eye Exams
As discussed above, regular examinations are crucial for individuals with lupus to monitor for changes and detect potential complications early. Prompt intervention can help prevent vision loss and preserve function. Lifestyle and home care tips can also play a significant role in managing lupus-related eye problems. Protecting eye health through wearing sunglasses to shield the eyes from UV radiation, maintaining good hygiene, and staying hydrated can help alleviate symptoms and maintain good health.
Understanding the potential impact of lupus on vision and eye health is vital for individuals living with the condition. By recognizing symptoms, seeking timely medical care, and adopting proactive management strategies, individuals can take control of their eye health and preserve vision for the long term.
Thank you Dr. Thomas for all the time you put in to sharing the important lupus information with us. I was diagnosed with severe dry eyes through a shirmer test a few years before my SLE diagnoses. I have also been diagnosed with Blepharitis by my Ophthalmologist a few years ago. I am grateful to know that this can be connected to my autoimmune condition.
I am currently having a high WBC my lymphocytes are high. My RA wants me to retest, my WBC were high in December and higher a few weeks ago. I’m wondering if you have any information on this and any patients that have experienced this type of thing.
Thank you for all your help. I hope you have a wonderful week.
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