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 eyes (eyelids)
  • crusting on the eyelids
  • excessive tears and discharge without much discomfort

Treatment

The treatment for ocular GVHD eyes 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 or consult BMT InfoNet’s GVHD Directory for a specialist near you at bmtinfonet.org/gvhd-directory.

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.)

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Updated August 2022

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