Although dry eye is not the only health issue experienced by patients with Sjögren’s disease, it is one of the most prevalent issues that affects their quality of life.
A 2021 patient survey from the Sjögren’s Foundation, Reston, Va. (https://sjogrens.org), found that 95% of patients had dry eye symptoms and that 94% had physician-diagnosed dry eye disease.
Dry eye had a moderate to major impact on quality of life among 75% of respondents, second only to fatigue (79%).1 Rheumatologists and ophthalmologists must work collaboratively to help patients soothe their dry eye symptoms.
Time to Diagnosis
Once a patient begins seeking help, three years elapse, on average, before they are diagnosed with Sjögren’s disease, which is a decrease from the six years that was once the average time to diagnosis.2 The time from symptom onset to diagnosis is even longer, up to a decade.3 Often, an ophthalmologist or a dentist recognizes Sjögren’s first on the basis of dry eye or dry mouth.
Dr. Akpek
“The great majority of the patients come in with dry eye complaints and get a diagnosis of Sjögren’s as a result of our workup,” says Esen K. Akpek, MD, chair, Foster Ocular Immunology and Inflammation Center, Duke University, Durham, N.C. Dr. Akpek previously oversaw the Jerome Greene Sjögren’s Disease Center at Johns Hopkins in Baltimore.
“It’s about half and half. Half present with the Sjögren’s diagnosis and are looking for better management of their ocular signs and symptoms. Half have severe dry eye that is not yet diagnosed as Sjögren’s and then subsequently have laboratory testing,” says Daniel Brocks, MD, corneal specialist and chief medical officer with BostonSight, Boston.
Ophthalmologists and optometrists use Schirmer’s or other tests without anesthesia and ocular surface staining with dyes, such as fluorescein and lissamine green, to help diagnose dry eye, says Vatinee Y. Bunya, MD, MSCE, Harold G. Scheie Chair and associate professor of ophthalmology and co-director, Penn Dry Eye & Ocular Surface Center, University of Pennsylvania Perelman School of Medicine, Philadelphia.
Dr. Brocks
Many ophthalmologists don’t conduct the same tests rheumatologists do, such as SS-A testing, a minor salivary gland ultrasound, biopsy or salivary flow test. Dr. Akpek uses those routinely for patients who may have underlying Sjögren’s.
At BostonSight, Dr. Brocks uses an early Sjögren’s disease profile biomarker test, a test that has potential indicators for the condition. Then, “depending on the results and signs and symptoms, I will typically refer to a rheumatologist for further testing and consideration of a biopsy as appropriate,” he explains.
When to Refer to an Ophthalmologist
When a rheumatologist sees a patient with newly diagnosed Sjögren’s, there may be some debate over when to refer that patient to an ophthalmologist. Should you refer if the patient’s dry eye is only mild or if they aren’t yet complaining of symptoms?
Dr. Bunya
“I think they should check in immediately [with an ophthalmologist],” says Janet E. Church, CEO of the Sjögren’s Foundation. “You want them to prevent progression. If someone gets to the point where their eyes are killing them and that’s when they finally go see somebody, they’ve already caused damage.” Additionally, if the patient is put on hydroxychloroquine, a common therapy for patients with autoimmune diseases, they need to see an ophthalmologist every 6 to 12 months for specific testing to monitor for side effects.
Dr. Akpek agrees that patients should be referred to an ophthalmologist sooner rather than later. “Any patient with a suspicion or diagnosis of Sjögren’s should be referred. Patients with Sjögren’s have worse clinical findings than symptoms due to stage 1 neurotrophic keratitis, which can be detected only by vital dye staining of the ocular surface,” she says.
“I refer all patients with Sjögren’s to an ophthalmologist at diagnosis for a targeted exam, including glandular function assessment,” says Kimberly Lakin, MD, MS, a rheumatologist with the Hospital for Special Surgery, New York. “This can promote early detection, prevent ocular complications and ensure that appropriate topical treatment is offered.”
Ms. Church
Ms. Church, who has Sjögren’s herself and counts nine doctors among the providers on her care team, says the referral to see another specialist also faces the challenge of time and priorities. “Sjögren’s is an incredibly expensive disease for the number of specialists and prescriptions and the number of over-the-counter products we need to stay comfortable each day. A lot of patients will push their priority appointment to what they feel like is bothering them most,” she explains.
Of course, ophthalmologists should refer patients to rheumatologists as well, on the basis of clinical suspicion or upon diagnosis of Sjögren’s disease.
Treatments Used
Over-the-counter artificial tears are supplementary treatments for both dry eye in general and dry eye in patients with Sjögren’s. Because dry eye is often more severe and progressive in those with Sjögren’s, anti-inflammatory treatments, such as topical cyclosporine (Restasis) or lifitegrast (Xiidra), should be prescribed irrespective of patient symptoms.
“This is mostly prophylactic because Sjögren’s can lead to vision loss due to corneal ulcers, infections and scarring,” says Dr. Akpek. In fact, dry eye and Sjögren’s are the most common ocular co-morbidities in elderly patients with corneal ulcers, other than contact lens use.4
Dr. Lakin
Non-steroidal anti-inflammatory topical dry eye treatments are without serious side effects. Both ophthalmologists and rheumatologists say they will prescribe these treatments to their patients with Sjögren’s disease when needed.
However, those are not the only treatments available—and this is where a referral to an ophthalmologist knowledgeable about dry eye and Sjögren’s can make a difference for patients.
Dr. Akpek follows the recommendations of the Tear Film and Ocular Surface Society’s Dry Eye Workshop II and escalates treatment according to the severity of the clinical findings. (Dry Eye Workshop III was held online in June.5,6) The workshop report (Dr. Akpek was a co-author) describes escalating treatments: moisture-retaining glasses, punctal plugs, secretagogues, neurostimulation, corticosteroids and biologics, such as autologous serum tears.
Treating dry eye in patients with Sjögren’s disease can be challenging, but it’s a good reminder that many options exist, Dr. Akpek says.
Dr. Meysami
In addition to tears and anti-inflammatories, prescription eye drops, ointments and even warm compresses are useful, Dr. Bunya says. She often combines these treatments with punctal plugs and cautery, the latter of which involves a procedure that permanently closes the tear duct openings.
BostonSight, where Dr. Brocks is chief medical officer, is home to the PROSE treatment for ocular surface diseases. PROSE is a rigid gas-permeable lens that sits on the conjunctiva and vaults over the cornea. It’s used every day and is filled with preservative-free saline, creating a liquid bandage over the eye while used, Dr. Brocks describes.
Although rheumatologists frequently refer their patients with Sjögren’s to ophthalmologists, many still recommend some mild to moderate treatments, such as tears and night-time ointments, says Alireza Meysami, MD, MBA, CPE, RhMSUS, division head, Division of Rheumatology, Department of Internal Medicine, Henry Ford Health System, Detroit, and associate professor of medicine, College of Human Medicine, Michigan State University, East Lansing. He reviews possible lifestyle modifications, such as taking breaks during screen time and using humidifiers, with patients.
“When conventional therapies are insufficient, autologous serum eye drops can be extremely beneficial,” he adds, referring to drops made from the patient’s own blood serum and containing growth factors and anti-inflammatory properties that closely mimic natural tears.
Future Treatments
Although treatment developments for Sjögren’s disease have languished for many years, that’s changing.
“This is an exciting time in Sjögren’s,” Ms. Church says. “We’re seeing an increase in research, discovering new things about the disease and demonstrating that it’s much more serious than historically thought.”
That increased research has led to potential treatments, including:
• An eye drop from Iolyx Therapeutics, ILYX-002, geared toward dry eye caused by autoimmune or inflammatory conditions. Phase 2 data on 105 patients found a “meaningful clinical improvement in ocular surface health,” according to the company.7
• TRYPTYR (acoltremon ophthalmic solution) 0.003%, a drop for dry eye approved by the U.S. Food & Drug Administration (FDA) in May. The manufacturer describes it as a “first-in-class TRPM8 receptor agonist (neuromodulator) that stimulates corneal sensory nerves to rapidly increase natural tear production.”8
• Cenegermin, an eye drop that was approved by the FDA for neurotrophic keratitis but is currently being researched for possible use in patients with Sjögren’s disease, Dr. Brocks says.
There also are several phase 2 and phase 3 systemic trials underway for Sjögren’s, Dr. Lakin says.
Systemic treatments may be considered in patients with Sjögren’s disease who have severe dry eye that does not respond to topical management, Dr. Akpek says.
Dr. Meysami and other doctors are taking part in Sjögren’s trials related to dry eye. He will serve as the principal investigator of a study that will offer access to emerging therapies aimed at effectively addressing systemic and glandular manifestations of the disease, including dry eye symptoms.
Additionally, more doctors are getting familiar with the use of PROSE and scleral lenses as they become more accessible—offering other treatment options, according to Dr. Brocks.
From One Specialty to Another
Ophthalomologists share some tips for rheumatologists to keep in mind from an ocular perspective when managing patients with Sjögren’s disease:
• Use preservative-free eye drops and topical cyclosporine or lifitegrast after a baseline exam even with only mild findings. Of course, the referral to an ophthalmologist should still be part of their care, but there could be a delay to securing an appointment. That’s why starting these treatments is still important.
• Find an ophthalomologist in your area who specializes in the cornea/ocular surface, Dr. Brocks advises. Even better, find a specialist who frequently works with patients with Sjögren’s.
“We have a disease that’s been disregarded for so many years,” Ms. Church says. “It’s been misjudged as a nuisance disease. ‘Just put some eye drops in or drink a little more water, and you’ll be fine.’ Of course, we’ve learned that’s not the case. It can be very serious.”
The Sjögren’s Foundation actively works to educate the various specialties involved with Sjögren’s care, such as pulmonology, nephrology, neurology and oncology, as well as primary care providers and dentists, Ms. Church adds.
There are also tips ophthalomologists can follow:
• Provide guidance on when more advanced interventions should be considered, such as amniotic membrane placement, scleral lenses or autologous serum drops, Dr. Meysami advises.
• Communicate findings from your exam and regarding the overall progression of dry eye severity so the rheumatologist stays in the loop, Dr. Lakin advises.
• Let the rheumatologist know promptly about any diagnosed eye infections. “Frequent infections impact the ability to use systemic immunosuppression for other disease manifestations. This underscores the importance of rheumatology/ophthalmology team approach to care,” Dr. Lakin says.
• Focus on early treatment and prevention instead of waiting until patients are uncomfortable and then treating them, Ms. Church recommended. This requires a mindshift in care, she adds.
Vanessa Caceres is a medical writer in Bradenton, Fla.
References
- Sjögren’s Foundation. Living with Sjögren’s and dry eye. 2024. https://sjogrens.org/blog/2024/living-with-sjogrens-and-dry-eye.
- Sjögren’s Foundation. Breakthrough goal. https://sjogrens.org/about-us/history/breakthrough-goal.
- Akpek EK, Mathews P, Hahn S, et al. Ocular and systemic morbidity in a longitudinal cohort of Sjogren’s syndrome. Ophthalmology. 2015 Jan;122(1):56–61.
- Hwang J, Li G, Sommi A, Klawe J, et al. Demographic and ocular comorbidities in elderly individuals with corneal ulcers. Ophthalmology. 2025;132:254–257.
- Jones L, Downie LE, Korb D, et al. TFOS DEWS II management and therapy report. Ocul Surf. 2017;15:575–628.
- Jones L, Craig JP, Markoulli M, et al. TFOS DEWS III management and therapy report. Am J Ophthalmol. 2025. https://www.sciencedirect.com/special-issue/10PHL822N4T.
- Iolyx Therapeutics. Iolyx Therapeutics announces phase 2 results for ILYX-2 in autoimmune dry eye disease. 2025 May 27. https://www.globenewswire.com/news-release/2025/05/27/3088611/0/en/Iolyx-Therapeutics-Announces-Phase-2-Results-for-ILYX-002-in-Autoimmune-Dry-Eye-Disease.html.
- Alcon. Alcon announces FDA approval of TRYPTYR (acoltremon ophthalmic solution) 0.003% for the treatment of the signs and symptoms of dry eye disease. 2025 May 28. https://investor.alcon.com/news-and-events/press-releases/news-details/2025/Alcon-Announces-FDA-Approval-of-TRYPTYR-acoltremon-ophthalmic-solution-0-003-for-the-Treatment-of-the-Signs-and-Symptoms-of-Dry-Eye-Disease/default.aspx.
