If you have chronic graft-versus-host disease (GVHD), you may also deal with dry, irritated, painful eyes. Uncontrolled inflammation can eventually damage your eyes and affect your vision. Between 40 percent and 90 percent of people with chronic GVHD will have eye problems. Fortunately, there are several prescription and over-the-counter treatments for managing your symptoms.

In this article, we’ll cover four eye symptoms associated with chronic GVHD. We’ll also cover how your doctor and ophthalmologist (eye specialist) manage these symptoms. They may recommend a combination of prescription treatments and home remedies to help.

How Does Chronic GVHD Affect the Eyes?

Chronic GVHD is a condition that affects people who have received a stem cell transplant (also known as a bone marrow transplant), a procedure that typically helps treat blood cancers. It replaces the blood-forming cells inside your bones with new, healthy ones.

In some people, the newly transplanted cells mistakenly attack and destroy your body’s cells. This is what’s known as GVHD. Chronic GVHD is defined as symptoms that develop at any time after their stem cell transplant. It has specific symptoms, but there are no signs of acute GVHD.

You’re more likely to have eye problems with chronic GVHD if the disease affects other organs as well. Examples of organs or areas of the body affected by GVHD include your mouth and skin.

Most cases of ocular GVHD start by affecting the tear glands and conjunctiva. The conjunctiva is the clear membrane that covers and protects your eye. It lubricates the eyes to keep them moist.

The conjunctiva works alongside your meibomian glands and lacrimal glands. Your meibomian glands make oil that combines with tears from lacrimal glands. The two substances then mix with mucus from the conjunctiva to lubricate and protect your eye.

Chronic ocular GVHD leads to inflammation, redness, and swelling in the conjunctiva and tear ducts. This can cause conjunctivitis, dry eye disease, and more. Your glands can’t make enough tears to keep your eyes moist. Over time, the inflammation scars and damages your eye.

Long-Term Effects of Chronic Ocular GVHD

Unfortunately, some symptoms of ocular GVHD stick around long term. Severe dry eyes may be a lifelong consequence of the disease. With the right treatment, you can treat mild symptoms. You’ll want to work closely with your ophthalmologist to diagnose and treat ocular GVHD.

Complications of untreated chronic ocular GVHD include permanent scarring and damage to the conjunctiva and tear glands. Scar tissue buildup and abnormal blood vessel growth can also affect your vision. You may also be at risk of developing cataracts (clouding of the lens). Another serious problem called corneal ulceration can happen if corneal damage isn’t treated. These complications negatively affect your ability to see and overall quality of life.

Symptoms of Chronic GVHD Affecting the Eyes

If you have chronic GVHD, you may notice changes in your eye health. Some signs to look out for include irritated eyes and eyelids, sensitivity to light and wind, and abnormal discharge. Recognizing the signs of ocular GVHD is the first step toward getting the right treatment.

1. Dry, Irritated Eyes

People with chronic ocular GVHD usually deal with dry, irritated eyes. This is because your glands can’t make enough tears to keep your eyes moist. Eye doctors refer to severe dry eyes as keratoconjunctivitis sicca (KCS). Unfortunately, KCS symptoms can last for years after your diagnosis.

Dry eye symptoms vary from person to person. You may notice a gritty sensation or experience pain. It can also feel like you have something stuck in your eye, even when nothing’s there. The irritation may be so bad that you can’t wear contact lenses. In some cases, your vision may change. New blurriness is usually due to dryness and not damage to your eyes. Adding moisture back should help treat blurry vision.

2. Sensitivity to Light and Wind

Your conjunctiva plays an important part in protecting your eyes from dust and irritants floating in the air. Dryness from ocular GVHD makes your eyes extra sensitive to wind and these irritants.

Photophobia (sensitivity to light) is also a sign of GVHD affecting the eyes. You may have photophobia if you:

• Blink a lot or squint when outside in the sun
• Try to avoid going outside on sunny days or during the daytime
• Use your hands or other objects to shield your eyes from sunlight
• Experience pain from bright light

Eye sensitivity can make it harder for you to leave the house and accomplish everyday tasks. You may have to take extra steps to protect your eyes and prevent discomfort.

3. Red, Irritated Eyelids

Chronic ocular GVHD can also affect your eyelids and the skin around your eyes. Some people develop blepharitis, a condition that causes:

• Redness or discoloration
• Swollen eyelids
• Itchiness
• Irritation
• Crust or white flakes that look like dandruff
• Eyelashes that grow abnormally or fall out
• Tears that are bubbly or foamy

If left untreated, blepharitis can also affect your vision and make dry eyes worse.

4. Tearing and Eye Discharge

Sometimes, ocular GVHD can cause excessive tearing. Your eyes may be more watery than normal, or they make a discharge. Watering or discharge is typically a sign of your eyes reacting to irritation from being dry. Some people with these symptoms may not experience the discomfort that comes along with ocular GVHD.

Treating and Managing Ocular Symptoms of Chronic GVHD

Treatments for chronic ocular GVHD focus on treating inflammation and keeping the eyes moist. Your ophthalmologist can suggest a specific treatment plan based on your symptoms. This plan might include prescription medications and eye drops. You can also try over-the-counter or home remedies to prevent irritation.

Prescription Medications and Eyedrops

Corticosteroids (steroids) dampen inflammation in the eyes to prevent scarring and damage. Immunosuppressive medications work in similar ways to manage symptoms. Ophthalmologists can prescribe pills and medicated eyedrops to treat ocular GVHD. Examples include:

• Eyedrops that contain steroids, such as prednisolone
• Eyedrops that contain immunosuppressants like cyclosporine A (Cequa, Restasis)
• Topical ointments with tacrolimus (Protopic)
• Pills like pilocarpine (Salagen) and cevimeline (Evoxac), which encourage tear production to treat dryness

Another option for treating ocular GVHD is autologous serum eye drops. These drops use serum from your blood, which contains proteins that help control inflammation in your eyes. Pharmacists make autologous serum eye drops specifically for you.

Researchers are also studying new ways to treat ocular GVHD. Some studies show promise with medications that target inflammation in different ways. Cells from healthy donors injected into the eyes may also help dampen inflammation and prevent more damage.

Punctal Plugs

The puncta are tiny holes in your eyelids where your tears drain into your tear ducts. Some ophthalmologists use punctal plugs to block the puncta. The plugs are roughly the size of a grain of rice. They help keep your eyes lubricated to relieve dryness and irritation. Your eye specialist may recommend temporary or semipermanent plugs, depending on how severe your symptoms are.

Scleral Lenses

Ocular GVHD makes it harder to wear traditional soft contact lenses. Your ophthalmologist may suggest scleral lenses instead. These larger and more rigid lenses cover most of the surface of your eye. Scleral lenses leave a small gap on your cornea (front layer of your eye) that can be filled with saline to keep your eyes moist.

Bandage contact lenses specifically help protect the surface of your eyes. Some come with a built-in membrane that moistens the eye for better healing.

Surgery

In some cases, your ophthalmologist may recommend surgery to treat your ocular GVHD. You may be a candidate if you have severe symptoms that have damaged your eyes. One example is heating and sealing your tear ducts. You may need this procedure if you have punctal plugs that keep falling out.

Lifestyle Changes and Home Remedies

The National Marrow Donor Program (NMDP) recommends that people with ocular GVHD take extra steps to protect their eyes. Their suggestions include:

• Avoiding dry environments, air conditioning, and wind whenever possible
• Using over-the-counter artificial tears without preservatives (which can irritate your eyes) for extra lubrication
• Taking flaxseed oil, which has omega-3 fatty acids that support healthy meibomian glands
• Using an eye ointment or gel before going to bed to help keep your eyes moist at night

If you have dry skin or crusting around your eyes, try to avoid picking at it. Use a warm compress instead to loosen the crusting so it’s easier to remove. It’s also a good idea to use a warm compress before bed to prevent eye crusting in the morning.

Talk With Others Who Understand

On myGVHDteam, people with graft-versus-host disease and their loved ones come together to ask questions, give advice, and share their stories with others who understand life with GVHD.

Do you or a loved one have eye problems related to GVHD? Did you receive the right follow-up? Share your experience in the comments below.