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If you have been diagnosed with Sjögren's syndrome, or your doctor suspects it, dry eyes are probably one of the symptoms that bother you most. On this page we explain what happens to the eye in Sjögren's, how the eye doctor takes part in the diagnosis, and which treatments can be added when lubricating drops are no longer enough.
What is Sjögren's syndrome?
Sjögren's syndrome is an autoimmune disease, meaning that the immune system mistakenly attacks the body's own tissues. The main target is the glands that produce fluids, above all the tear glands and the salivary glands. That is why the two best-known symptoms are dry eyes and a dry mouth.
The disease is much more common in women, and is usually discovered in middle age, although it can appear at any age. It can occur on its own (primary Sjögren's) or alongside another autoimmune disease, such as rheumatoid arthritis, lupus or scleroderma.
Sjögren's is a disease of the whole body, not just of the eyes and mouth. It can cause tiredness, joint pain, dry skin and a dry nose, and sometimes involvement of other organs. So it is important to have a rheumatologist (a doctor who specialises in autoimmune and joint diseases) following your care.
What happens to the eye in Sjögren's?
The inflammation in the tear gland reduces production of the watery part of the tears. This is called aqueous-deficient dry eye, and it tends to be more severe and more stubborn than ordinary dryness. In medical language, the damage to the cornea and conjunctiva caused by the dryness is called keratoconjunctivitis sicca.
Many patients with Sjögren's also have meibomian gland dysfunction (MGD, affecting the oil glands in the eyelid margins), which increases evaporation. In other words, the tears are few and also evaporate quickly. In addition, the inflammation itself damages the surface of the eye and worsens the vicious circle of dryness. For an explanation of these mechanisms, see Dry eye: what it is and when you need a specialist.
The common symptoms are burning, a gritty feeling, itching, sensitivity to light, tired eyes and blurred vision that changes during the day. Some people notice, surprisingly, a thick discharge or strands of mucus in the corners of the eyes. In some cases small strands of mucus and cells form on the cornea (filamentary keratitis), causing pain and a strong foreign-body sensation.
The eye doctor's role in diagnosis
Sometimes dry eye is the first sign that leads to the diagnosis. Severe dryness, especially in a relatively young woman or when there is also a dry mouth, joint pain or abnormal blood test results, may lead the eye doctor to recommend a rheumatology assessment.
The accepted classification criteria for primary Sjögren's (from the American and European rheumatology organisations, 2016) combine several types of findings: certain antibodies in the blood (anti-SSA/Ro), a biopsy of the minor salivary glands in the lip, a measurement of the amount of saliva, and two eye tests:
- Schirmer test: a small paper strip at the edge of the eyelid measures how many tears the eye produces in five minutes.
- Staining of the eye surface: special dyes, such as fluorescein, show up the damage to the cornea and conjunctiva under the slit lamp, and the doctor gives it a score.
The diagnosis itself is usually made by the rheumatologist, but the eye findings are an important part of it. Details of the tests are on the dry eye testing page.
The foundation: daily care at home
- Preservative-free lubricating drops, often and throughout the day. With such frequent use, preservatives can damage the surface of the eye. See preservative-free drops.
- A thick gel or ointment before sleep, to protect the eye at night.
- Environment: a humidifier in the bedroom and in the room where you work, directing air conditioning and fans away, and glasses with side shields in the wind and outdoors.
- Care of the meibomian glands: warm compresses and eyelid hygiene, when there is an MGD component.
- A review of medicines: certain medicines increase dryness. Check with your treating doctors whether they can be adjusted. Do not stop a medicine yourself.
In addition, the eye doctor may prescribe anti-inflammatory drops that calm the inflammation on the surface of the eye, and the rheumatologist or eye doctor may consider medicines taken by mouth that stimulate the secretion of saliva and tears.
When the foundation is not enough: treatments at the clinic
In Sjögren's the dryness can be severe enough to require additional treatments. The following treatments are provided at the clinic, as needed and after an examination:
Punctal plugs
Tiny plugs inserted into the tear drainage openings at the eyelid margins, which keep the few tears on the eye for longer. In Sjögren's, where the main problem is a lack of tears, they can be particularly useful. It is usually preferred to calm significant inflammation of the eye surface first. Details are on the punctal plugs page.
Autologous serum eye drops
Drops made from the patient's own blood. The serum (the liquid part of the blood) contains substances that are also present in natural tears, such as growth factors and vitamins, which are not found in ordinary lubricating drops. They are intended for severe dryness that does not respond well enough to the usual treatment. A Cochrane review found that they may improve symptoms in the short term, but the evidence is still limited. Details are on the autologous serum eye drops page.
Bandage contact lens
In severe cases, for example when there is a defect in the top layer of the cornea that does not heal, or painful filamentary keratitis, the eye doctor may fit a special soft contact lens that acts as a "bandage" and protects the cornea. It requires close follow-up because of the risk of infection. Details are on the bandage contact lens page.
Treatment of the glands and eyelids
When there is also significant MGD, meibomian gland expression or IPL treatment (broad-spectrum pulsed light, not a laser) can be added, to improve the oily layer and reduce evaporation.
In Sjögren's, teamwork is especially important: the rheumatologist treats the general disease, and the eye doctor treats the surface of the eye. Keep each of them updated about the medicines the other has prescribed.
Practical tips for living with dryness
- Screens: schedule short breaks for yourself, and blink fully and deliberately. Place the screen slightly below eye level, so that the eye is less open.
- Flights: the air on a plane is very dry. Keep preservative-free drops in your hand luggage, and on long flights a gel can also help.
- Smoke and wind: avoid smoking and smoky rooms, and wear wraparound sunglasses outdoors.
- Before surgery: tell the medical team about Sjögren's, even before surgery that is not on the eyes, so that they protect your eyes during anaesthesia. Before eye surgery, including vision-correction surgery, the dryness affects the decision and the recovery.
Long-term follow-up
Sjögren's is a chronic disease, and the dryness can change over the years. Regular follow-up with an eye doctor makes it possible to adjust the treatment and to detect damage to the cornea early. People who take hydroxychloroquine (a medicine commonly used in autoimmune diseases) also need screening tests of the retina at regular intervals, separately from the treatment of dryness.
When to see a doctor straight away: severe eye pain, a sudden drop in vision, a red eye with strong sensitivity to light, a white spot on the cornea, or pain and redness in someone wearing a bandage contact lens. Severe dryness increases the risk of damage to and infection of the cornea, so do not wait.
Want a basic explanation first?For a basic guide to dry eye: the guide on the Mitzmutz site
Frequently asked questions
Does everyone with dry eyes and a dry mouth have Sjögren's?
No. Dry eyes and a dry mouth are common, especially with age and as a result of medicines. Sjögren's is a diagnosis made from a combination of symptoms, blood tests, eye tests and sometimes a biopsy, usually by a rheumatologist.
Can dry eye in Sjögren's harm my vision?
In most cases the dryness causes discomfort and unstable vision, not permanent damage. But when the dryness is severe and untreated, the cornea can be damaged, so regular follow-up with an eye doctor is important.
I take hydroxychloroquine. Do I need a special eye examination?
Yes. People who take hydroxychloroquine long term need screening tests of the retina at regular intervals, separately from the treatment of dryness. Coordinate this with your rheumatologist and eye doctor.
Are punctal plugs suitable in Sjögren's?
Often yes, because in Sjögren's there is a lack of tears. It is usually preferred to calm significant inflammation of the eye surface first, so that the plugs do not keep inflammatory tears on the eye. The decision is made after an examination.
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
- Shiboski CH, Shiboski SC, Seror R, et al. 2016 American College of Rheumatology/European League Against Rheumatism classification criteria for primary Sjögren's syndrome. Arthritis Rheumatol. 2017;69(1):35-45.
- Foulks GN, Forstot SL, Donshik PC, et al. Clinical guidelines for management of dry eye associated with Sjögren disease. Ocul Surf. 2015;13(2):118-132.
- 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.
- Akpek EK, Amescua G, Farid M, et al. Dry Eye Syndrome Preferred Practice Pattern®. Ophthalmology. 2019;126(1):P286-P334.
The information on this site is general only. It is not medical advice and does not replace an examination by an eye doctor.