Ocular GVHD

Mar 21, 2024Partners, Patients

If you are suffering from eye problems after bone marrow transplant — things like dryness, itching, redness, and pain — you might have ocular GVHD. When you receive someone else’s stem cells during a bone or blood marrow transplant, the donor’s cells might mistakenly identify your body’s immune cells as a threat, because your cells are “foreign” to the donor’s immune system. When this happens, an inflammatory immune response is set in motion causing what’s called graft vs. host disease, or GVHD. GVHD can attack just about any part of the body…including your eyes.

The good news, though, is that there are many highly effective treatments and lifestyle modifications that can help…we’ll be exploring them all here!

Symptoms of Ocular GVHD

When GVHD affects your eyes, it causes inflammation of the conjunctiva — the tissue covering the white part of the eye and eyelid — and the glands that produce tears, which hinders the glands from producing the tears necessary to keep the eye moist.

This can cause symptoms like

  • Red, swollen, and “crusty” eyelids
  • Pain, burning, and itching
  • Dry eyes, which can cause a “gritty” feeling in the eye
  • Difficulty keeping your eyes open
  • Sensitivity to light and wind
  • Occasional blurred vision
  • Excessive tear production and discharge

Thankfully, ocular GVHD rarely affects the inner structures or nerves of the eye, so vision shouldn’t be affected outside of the blurriness that can result from dry eyes.

Treatments for GVHD of the Eye

Treatments for GVHD of the eye focus on alleviating the uncomfortable symptoms that accompany the disease, as well as protecting and healing the eyes from existing or future damage.

Both medicated and non-medicated eye drops play an important role in disease management. Preservative-free eye drops can (and should) be used liberally to keep eyes moist throughout the day. Use only one drop at a time, though… that’s all your eyes can handle in a single application. Steer clear of redness reducing eye drops, or eye drops formulated for allergies, too — those can make symptoms worse.

Medicated drops that can protect the eyes from damage can also be prescribed by an ophthalmologist — cyclosporine, tacrolimus, lifitegrast, and steroid eye drops are examples. Prescriptions — like cevimeline or pilocarpine — can sometimes help people produce more tears, too. Systemic treatments like corticosteroids can help reduce inflammation and immune system reactivity throughout the body as well.

Autologous serum eye drops are another excellent treatment option for ocular GVHD and they certainly qualify as the most unique…they’re made from your own blood! How? The serum portion of the blood — the liquid that remains along with plasma after blood cells are removed — is extracted, sterilized, and formulated into eye drops that are rich in nutrients and impart healing properties to the eyes. Amazing, right?

Punctal plugs may help relieve dry eyes, too, by plugging the tear ducts so tears no longer drain away from the eyes. This helps keep the eyes moisturized and can be temporary or permanent.

Lifestyle Modifications – Living with Eye GVHD

In addition to the treatments mentioned above, here are some additional things you can do every day to help your eyes feel more comfortable:

  • Start incorporating omega-3 fatty acids into your diet, as they may help relieve the symptoms of dry eye. Talk to your doctor about adding omega-3 supplements to your routine, or add 2 tbsp of flaxseed oil to your diet daily. Cold water fish — like salmon, mackerel, anchovies, tuna, herring, and sardines — are also great sources of omega-3, as are nuts and seeds, like chia seeds, flax seeds, and walnuts.
  • Try to stay out of the wind, air conditioning, and dry environments. Add humidifiers throughout your home to keep the air moist, especially in the winter.
  • Reduce your screen time, and take lots of breaks from your phone and computer to avoid eye strain.
  • Some medications cause dry eye as a side effect — antihistamines, sleeping aids, and antidepressants are just a few examples. Be sure to tell your doctor about everything you’re taking so they can advise you if adjustments need to be made.
  • If you wear makeup, choose gentle mascaras and eye makeup that’s formulated for sensitive skin, and be very careful not to get any makeup or makeup removers directly in your eye.
  • Use warm compresses on your eyes to alleviate crusting and discomfort. Never rub your eyes, or pick crusts from the corners of your eyes.

Protective Eyewear

When your eyes are compromised by ocular GVHD, any amount of wind or moving air (even from something as innocent as a heater or air conditioner) can be extremely irritating. This presents a conundrum, of course. Avoidance is effective — pointing the vents in your car away from your eyes, staying indoors when it’s very windy — but avoidance isn’t always practical.

Enter protective, windproof eyewear.

Regular glasses can be helpful indoors, and wraparound sunglasses or goggles (like AirShields®) are life-savers outside. Make sure whatever outdoor option you choose has UV protection, too, to protect your eyes from sun damage.

Here’s a couple sites where you can find this type of eyewear online:


Scleral Contact Lenses

While people suffering from GVHD of the eye shouldn’t wear traditional contact lenses, they most certainly CAN benefit from scleral lenses — hard lenses that cover a large portion of the eye, including the whites (the sclera). These lenses are custom-fit, and not only allow more oxygen into the eye, they also keep more moisture in, while protecting the eye from damage. You can learn more about scleral lenses here. The PROSE (Prosthetic Replacement of the Ocular Surface Ecosystem) system by BostonSight® is often hailed as the gold standard of scleral lenses, but other commercial lenses are available by prescription as well.

“Bandage contact lenses” are also sometimes used in patients with ocular GVHD, and are worn for much longer periods of time than traditional contact lenses to help heal the surface of the eye. These types of lenses are used only under the careful supervision of an eye professional, as are scleral lenses.

Avoid Medically Unnecessary Surgeries

When you have ocular GVHD, any type of cosmetic surgery — especially around your eyes — should be avoided at all costs. Things like permanent eyeliner, laser vision correction, lash extensions, eyelid lifts, and the like are all (sadly) asking for trouble. Surgery damages the delicate tissue around your eyes, and can aggravate an already touchy immune system, potentially making the symptoms of your disease worse.

Medically necessary surgeries — says Dr. Zhonghui Katie Luo, MD, an ophthalmologist who practices at Massachusetts Eye and Ear and teaches at Harvard medical school — are different, however. Things like cataract or glaucoma surgery may be unavoidable, but should always be performed by a specialist well-versed in treating GVHD patients.

“Cataract surgery is an exception because, after transplant, patients oftentimes can’t avoid having steroids somewhere in treatment,” says Dr. Luo. “And these patients tend to have earlier onset of cataracts or more rapid progression of cataracts than the general population. You won’t be able to see well if you have cataracts. That’s why cataract surgery is an exception. You have to have it done, but you do have to find a surgeon who understands what GVHD is because although the surgery might be very similar, your post-op or healing process is very, very different compared to the general population.”

If you’d like to see Dr. Luo’s full presentation and Q&A session on ocular GVHD, you can watch it here.

Find a Specialist

As a GVHD patient, your Rolodex is likely filled to the brim with every kind of medical specialist under the sun. But if you don’t have an ophthalmologist who specializes in treating GVHD patients, you need to make room for one more. Why?

Because while your current eye doctor is probably wonderful (you wouldn’t be going to them otherwise!) it’s important to have a specialist versed in ocular GVHD on your healthcare team, too. Your current eye doctor can work in tandem with the specialist to ensure you’re receiving the best care possible to prevent long-term issues.

Ask your other GVHD docs for recommendations, or check out the directory here to find someone near you.









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