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A bone marrow transplant (a transplant of stem cells from a donor) saves lives, but afterwards some patients develop severe, long-lasting dry eyes. This page is for people who have had a transplant or are preparing for one, and for their families. Here you will find an explanation of ocular GVHD, what is checked, which treatments exist and when you need to get help straight away.
What ocular GVHD is
GVHD (graft-versus-host disease) is a condition in which immune cells that came from the donor recognise the recipient's tissues as foreign and attack them. This can happen in the skin, mouth, liver, lungs and other organs. When it happens in the eyes, it is called ocular GVHD.
Ocular GVHD is mainly linked to the chronic form of the disease, and occurs in a considerable proportion of patients who have chronic GVHD in other organs. It can also appear when the signs in the rest of the body are relatively mild.
Why it causes dryness and pain in the eyes
The inflammation damages several parts that are responsible for healthy tears. The tear gland (the gland above the eye that produces the watery part of the tears) is damaged and produces less. The meibomian glands in the eyelid margins, which produce the oily layer, become blocked. The conjunctiva (the clear membrane that covers the white of the eye and the inside of the eyelids) can also become inflamed, and scarring sometimes forms in it.
The result is combined dryness: both few tears and tears that evaporate quickly. Without a protective tear film, the surface of the cornea is exposed and damaged, which explains the pain, burning and sensitivity to light. Some of the medicines given after a transplant, such as long-term steroids, also affect the eye and require follow-up.
How it is recognised
The symptoms sometimes start gradually and are mistaken for "just tiredness". Pay attention if the following appear:
- Dryness, burning or a gritty feeling in the eyes.
- Sensitivity to light, wind or air conditioning.
- Red eyes, or a sticky, mucous discharge.
- Blurred vision that improves with blinking.
- Eye pain, mainly in the morning or at the end of the day.
A dry mouth, skin changes or mouth pain together with eye symptoms strengthen the suspicion. Tell the transplant team and the eye doctor about any change in your eyes, even if it seems small to you.
What the eye doctor checks
A group of experts from different countries has proposed criteria for diagnosing chronic ocular GVHD, which combine a symptom questionnaire and relatively simple tests. The examination usually includes:
- A symptom questionnaire (such as OSDI) that records the severity of the complaints over time.
- A Schirmer test (a thin paper strip placed at the edge of the eyelid that measures how many tears are produced).
- Staining of the cornea with fluorescein (a harmless yellow-orange dye) to see damaged areas.
- Assessment of redness and scarring of the conjunctiva, and examination of the meibomian glands.
- Measurement of the pressure inside the eye and examination of the lens, because long-term steroid treatment can raise the pressure in the eye and cause cataract (clouding of the lens).
To make the examination useful, bring to the visit an up-to-date summary from the transplant team, a list of all the medicines you are currently taking (including the steroid dose, if any), and a description of GVHD involvement in other organs. This information helps the eye doctor understand the full picture and choose treatment that also suits your general condition.
More information about the tests is on the dry eye testing page. It is especially important to have an eye examination before the transplant, so that there is something to compare with.
Treatment options
The aim is to protect the surface of the eye, reduce inflammation and ease the symptoms. Treatment is built up in stages, according to severity.
Basic treatment
Frequent preservative-free lubricating drops, a gel or ointment at night, and warming and gentle cleaning of the eyelids. Glasses with side shields may reduce evaporation in wind and air conditioning. It is important to use preservative-free drops, because with frequent use the preservative itself irritates the eye. An explanation is on the preservative-free eye drops page.
Anti-inflammatory treatment
The eye doctor may prescribe anti-inflammatory drops, sometimes for a long period. Steroid drops are usually given for short periods and with follow-up, because of the risk of raised pressure inside the eye and of infections.
Treatments at the clinic
- Punctal plugs: tiny plugs that block tear drainage, so that the few tears produced stay on the eye for longer.
- Autologous serum eye drops: drops prepared from the patient's blood, which contain natural substances that support healing of the eye surface. In GVHD, suitability is assessed together with the transplant team.
- Bandage contact lens: a soft lens that acts like a "bandage" for the cornea when there is a wound that does not heal or severe pain. In patients whose immune system is suppressed, the risk of infection requires especially close follow-up.
- Meibomian gland expression, when the glands are blocked and contribute to the dryness.
Research on treatments for ocular GVHD is still limited, and decisions are based to a large extent on clinical experience and expert recommendations. So it is important to choose together with the doctor, and to check regularly whether the treatment is helping.
Living with ocular GVHD: daily steps
Alongside medical treatment, small changes in your environment and habits may reduce the symptoms:
- Avoid a direct flow of air on your face from air conditioning, a fan or the car heater.
- A humidifier in the bedroom may help, especially in winter and in air-conditioned rooms.
- In front of screens, remember to blink, take short breaks and place the screen slightly below eye level.
- Keep preservative-free drops within reach, at home, in your bag and at work.
- Sunglasses with side shields protect against both light and wind.
- Wash your hands before every use of drops, because after a transplant the risk of infection is higher.
Long-term follow-up
Ocular GVHD can change over months and years: getting worse at certain times and settling down at others. So it is important to continue regular eye follow-up even when the symptoms settle. At follow-up visits the cornea, the quantity of tears and the pressure inside the eye are checked, and the treatment is adjusted. A change in the transplant team's general treatment, such as a reduction in immunosuppressive medicines, is a good time for another eye examination.
Working together with the transplant team
Ocular GVHD is part of a disease that affects the whole body, so the eye doctor works together with the haemato-oncologist (a doctor specialising in blood diseases and cancer) and the transplant team. Decisions about the general treatment that suppresses the immune system are made by them. The eye doctor reports the condition of the eyes to them, because a worsening in the eyes can indicate activity of the disease.
Never change or stop a medicine you received from the transplant team because of your eyes. If you think a certain medicine is affecting your eyes, talk about it with the doctor who prescribed it.
When to see a doctor straight away: severe eye pain, a sudden drop in vision, marked sensitivity to light, a pus-like discharge, a very red eye or a white spot on the cornea. After a transplant the immune system is weaker, and a corneal infection can develop quickly. You should be examined by an eye doctor or at an eye emergency department the same day, and let the transplant team know.
In summary
Dry eyes after a bone marrow transplant are not "just another side effect" to be endured in silence. Early detection, tailored treatment and coordination between the eye doctor and the transplant team can bring great relief and protect the cornea. If ordinary drops are no longer enough, this is the time to be examined by a dry eye specialist.
Want a basic explanation first?When to see a doctor about dry eyes: the guide on the Mitzmutz site
Frequently asked questions
How long after the transplant can dry eyes appear?
It is usually in the first months after the transplant, and sometimes around the time the medicines that suppress the immune system are reduced, but it can also appear later. So it is important to continue eye follow-up even when everything seems quiet.
Does GVHD of the eyes harm vision?
In most cases it mainly causes discomfort and blurred vision that improves with treatment. In severe cases it can damage the cornea, so regular follow-up and early treatment are important.
Can autologous serum eye drops be used after a transplant?
Autologous serum eye drops (drops prepared from the patient's own blood) are one of the options in ocular GVHD. Suitability also depends on blood counts and general condition, so the decision is made in coordination with the transplant team.
Is it worth seeing an eye doctor before the transplant?
Yes. An eye examination before the transplant provides a point of comparison, making it easier to spot an early change afterwards.
Home care not enough? We can look into it.
At the dry eye clinic in Haifa we find out what is causing the dryness and build a personal treatment plan.
Sources
- Ogawa Y, Kim SK, Dana R, et al. International Chronic Ocular Graft-vs-Host-Disease (GVHD) Consensus Group: proposed diagnostic criteria for chronic GVHD (Part I). Sci Rep. 2013;3:3419.
- Pan Q, Angelina A, Marrone M, Stark WJ, Akpek EK. Autologous serum eye drops for dry eye. Cochrane Database Syst Rev. 2017;2:CD009327.
- Ervin AM, Law A, Pucker AD. Punctal occlusion for dry eye syndrome. Cochrane Database Syst Rev. 2017;6:CD006775.
- Shah C, Raj CV, Foulks GN. The evolution in therapeutic contact lenses. Ophthalmol Clin North Am. 2003;16(1):95-101.
- Jones L, Downie LE, Korb D, et al. TFOS DEWS II Management and Therapy Report. Ocul Surf. 2017;15(3):575-628.
The information on this site is general only. It is not medical advice and does not replace an examination by an eye doctor.