Eyes and Chronic GVHD (Ocular GVHD)

Chronic graft-versus-host disease frequently affects the eyes causing discomfort and impaired vision.

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Symptoms

Chronic GVHD can affect the surface of your eye, the inside of your eyelid and can damage tear glands.  Symptoms may include:

  • tired, gritty, itchy or burning eyes
  • difficulty keeping your eyes open
  • sensitivity to bright light or wind
  • intermittent blurry vision
  • red and swollen eyelids
  • crusting on the eyelids
  • excessive tears and discharge without much discomfort

Treatment

The treatment for ocular GVHD depends on the severity of the symptoms. Most cases can be managed with:

  • artificial tear drops or ointments (make sure they are preservative-free)
  • steroid drops or ointments
  • cyclosporine eye drops
  • plugging tear ducts so that moisture remains in your eyes
  • adding humidity to your home
  • wearing goggles to limit exposure to the wind (see 7eye.com/collections/dry-eye or zienaeyewear.com for examples)

If the problem is more severe and is affecting your vision, your doctor may recommend:

  • eye drops made from your blood serum (autologous serum drops)
  • a bandage contact lens to protect the surface of the eye
  • a scleral lens, such as the PROSE system offered by BostonSight®, that can relieve symptoms and improve vision

What to Avoid

If you have GVHD in your eyes:

  • do not wear regular contact lenses
  • avoid rubbing your eyes
  • use only eye drops that do NOT contain a preservative
  • do not dig crusted mucous from the corner of your eyes with your fingernails or a tissue; instead, use warm, wet compresses to soften and remove it; applying warm compresses for 5-10 minutes at night may help prevent morning crusting
  • avoid using redness relievers such as Visine®, Opcon A®, Naphon A® or Clear Eyes® which can make dry eyes worse
  • do not use allergy eye drops such as Alaway® or Zaditor® because they will not treat the root problem

Take Action!

  • Tell your doctor immediately about any eye discomfort or vision changes you experience. Prompt treatment may prevent severe damage to the eye.
  • When in the sun, be sure to wear sunglasses with UV protection to protect your eyes from further damage. Use wrap-around sunglasses for added protection.
  • Take frequent breaks from viewing screens on electronic devices.
  • Be careful when applying make-up near your eyes and avoid unnecessary eye surgeries, such as cosmetic eyelid surgery and lash extensions.
  • Ask your transplant team to recommend an ophthalmologist who is familiar with symptoms of ocular GVHD. You can also consult BMT InfoNet’s GVHD Directory for a specialist near you.

Watch this video about your eyes and chronic GVHD. Click here to read the transcript of this video and download the slides.

(To view this page in Spanish click here.)

Next Page: Mouth and GVHD

Updated  June 2024

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