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PubMed This is a summary of 20 peer-reviewed journal articles Updated
Ophthalmology

Living with Scleritis: Long-Term Monitoring and Care

At a Glance

Living with scleritis requires regular eye exams, medication monitoring with blood tests, and a plan for recurrent flares. Watching for deep eye pain or vision changes and seeking emotional support can help protect vision and quality of life.

Living with scleritis is a long-term commitment to self-care and medical surveillance. Because this condition is often chronic and can be linked to systemic health issues, managing it requires more than just an eye doctor—it requires a coordinated team and a proactive approach to your overall well-being [1].

Building Your Care Team

Scleritis is a rare and complex disease that is best managed through a multidisciplinary approach. You are the center of this team, which should include:

  • Uveitis or Ocular Inflammation Specialist: An ophthalmologist with advanced training in managing inflammatory eye diseases [1]. They will lead your eye care and monitor for structural changes in the sclera.
  • Rheumatologist: Because a large percentage of adult scleritis cases are linked to systemic conditions like rheumatoid arthritis or vasculitis, a rheumatologist is essential for managing the body-wide immune response and prescribing systemic medications [2][3].
  • Support Specialists: Depending on your needs, you may also work with a Glaucoma Specialist (to manage eye pressure), a Cornea Specialist (if your vision is affected by corneal thinning), or a Mental Health Professional to help manage the stress of chronic illness [4][5].

Long-Term Monitoring: The Eyes

Even when your eye feels better and the redness is gone, “silent” complications can still develop. Regular eye exams are necessary to monitor for:

  1. Cataracts and Glaucoma: Both the disease itself and the steroids used to treat it can cause cloudy lenses (cataracts) or high eye pressure (glaucoma) [6][4].
  2. Scleral and Corneal Thinning: Ongoing inflammation can slowly wear away the structural layers of the eye, even without intense pain [7].
  3. Retinal Issues: Posterior scleritis or severe inflammation can lead to fluid behind the retina (macular edema) or retinal detachment, which requires specialized imaging like OCT or B-scan ultrasound to detect [8][9].

Monitoring Systemic Medications

If you are taking Immunomodulatory Therapy (IMT) or biologics, your body needs regular check-ups to ensure these drugs are working safely [1].

  • Blood Work: Systemic medications require individualized blood testing schedules to check your liver enzymes and kidney function, as well as your white blood cell counts to ensure your immune system isn’t too suppressed. Do not stop immunosuppressive medication because of a missed test without clinician guidance [10][11].
  • Infection Screening: Biologics can increase your risk of infections. Your team will monitor you for signs of illness and may require updated vaccinations or screenings for tuberculosis and hepatitis [12][13].

Recurrence and Outlook

It is important to be realistic: scleritis frequently recurs. One large study found that recurrence happened in 62% of patients with an associated immune-mediated disease and 49% of those without one [2]. These flares can occur months or even years after your last episode [9].

However, the long-term prognosis is generally positive with modern treatment. In one study, many patients achieved disease control through a combination of medications. Early specialist treatment can preserve vision, though outcomes depend on the subtype and any complications [10][14].

The Psychological Burden

The combination of chronic severe pain, the fear of vision loss, and the “medical treadmill” of constant appointments can be exhausting.

  • Anxiety and Depression: Clinical anxiety is reported in up to 9% to 22% of scleritis patients depending on the group studied, and depression is also a frequent issue [5]. Other estimates suggest up to 35% of people with ocular inflammation experience these symptoms [15].
  • Coping Strategies: Education about your disease and active participation in your care plan are linked to lower anxiety levels [15]. Don’t hesitate to seek support from a therapist or a patient support group; treating the mind is a vital part of treating the eye [16][17].

Everyday Practical Care

To aid daily comfort and safety:

  • Wear high-quality sunglasses to manage photophobia.
  • Ask your specialist before wearing contact lenses or driving during an active flare.
  • Avoid over-the-counter “redness-relief” eye drops, which can mask symptoms.

When to Call Your Doctor

You should contact your care team immediately if you experience:

  • A return of the characteristic “boring” pain [9].
  • Any new blurring or “veils” in your vision [18].
  • New “spots” or changes in the color of the white of your eye [19].
  • Signs of infection, such as a fever or persistent cough while on immunosuppressants [20].

Common questions in this guide

How often should I have eye exams if I have scleritis?
Regular eye exams are important even when pain and redness improve because complications such as cataracts, glaucoma, tissue thinning, or retinal problems may be silent. Your eye specialist should set the schedule based on your scleritis subtype, treatment, and history.
What blood tests might I need while taking medicine for scleritis?
Systemic medicines for scleritis may require blood tests to check liver function, kidney function, and white blood cell counts. Depending on the medicine and your health history, your care team may also recommend infection screening or updated vaccinations.
How will I know if my scleritis is coming back?
A return of deep, boring eye pain, redness, blurred vision, veils in your vision, new spots, or changes in the eye’s color can signal a flare or complication. Contact your care team promptly so they can tell you how quickly you need an examination.
Can scleritis come back after treatment?
Yes, scleritis can recur, sometimes months or years after the last episode. Recurrence may be more likely when scleritis is associated with an immune-mediated disease, but it can also occur without one, so a clear flare plan is helpful.
What should I do if I develop a fever or cough while taking a biologic or immunosuppressive medicine?
Contact your care team promptly because these medicines can increase the risk of infection. Do not stop or change the medicine on your own; ask your clinician what to do while you are being evaluated.
How can I cope with the emotional strain of living with scleritis?
Education, active participation in your care plan, and support from a mental health professional or patient group may help with anxiety, depression, and the stress of repeated appointments. Tell your care team about emotional symptoms so they can include psychological support in your overall care.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Who is the lead coordinator of my multidisciplinary care team, and how do you communicate with my rheumatologist?
  2. 2.How many scleritis patients do you currently manage, and are you a specialist in uveitis or ocular inflammatory disease?
  3. 3.What is my specific monitoring schedule for 'silent' complications like glaucoma or cataract that might be caused by my medications?
  4. 4.Which blood tests will I need to monitor my liver and kidney function while I'm on this immunomodulatory therapy?
  5. 5.Given my history, what is the 'flare protocol' if I feel my pain returning—who do I call, and how quickly can I be seen?
  6. 6.At what point would we consider reducing my medications, and what factors guide that decision?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (20)
  1. 1

    Current Approach for the Diagnosis and Management of Noninfective Scleritis.

    Dutta Majumder P, Agrawal R, McCluskey P, Biswas J

    Asia-Pacific journal of ophthalmology (Philadelphia, Pa.) 2020; (10(2)):212-223 doi:10.1097/APO.0000000000000341.

    PMID: 33290287
  2. 2

    Scleritis and Development of Immune-Mediated Disease: A Retrospective Chart Review.

    Morrison T, Gottman M, Do T, et al.

    The Journal of rheumatology 2024; (51(8)):825-830 doi:10.3899/jrheum.2023-0788.

    PMID: 38302174
  3. 3

    Sclerokeratitis and Secondary Glaucoma in Relapsing Polychondritis in a 30-Year-Old Asian Male Patient: A Case Report.

    Flores LKC, Siazon RR

    Cureus 2025; (17(2)):e79128 doi:10.7759/cureus.79128.

    PMID: 40109806
  4. 4

    Determinants of Non-infectious Scleritis Complications and Their Impact on Visual Outcome: Results from the International AIDA Network Scleritis Registry.

    Sota J, Hinojosa-Azaola A, de-la-Torre A, et al.

    Ophthalmology and therapy 2026; (15(6)):2081-2093 doi:10.1007/s40123-026-01390-5.

    PMID: 42105127
  5. 5

    The Association Between Mental Health Disorders and Non-Infectious Scleritis: A Prevalence Study and Review of the Literature.

    Abdel-Aty A, Kombo N

    European journal of ophthalmology 2022; (32(4)):1850-1856 doi:10.1177/11206721211067652.

    PMID: 34913750
  6. 6

    Necrotizing Scleritis: A Review.

    Dutta Majumder P, Agarwal S, Shah M, et al.

    Ocular immunology and inflammation 2024; (32(7)):1405-1419 doi:10.1080/09273948.2023.2206898.

    PMID: 37279404
  7. 7

    Clinical profile, treatment, and visual outcome of scleritis: A single ophthalmologist experience.

    Magesan K, Patnaik G, Majumder PD, Biswas J

    Oman journal of ophthalmology 2022; (15(2)):153-158 doi:10.4103/ojo.ojo_168_21.

    PMID: 35937739
  8. 8

    Optical Coherence Tomography: Focus on the Pathology of Macula in Scleritis Patients.

    Smeller L, Toth-Molnar E, Sohar N

    Journal of clinical medicine 2023; (12(14)) doi:10.3390/jcm12144825.

    PMID: 37510941
  9. 9

    Clinical Features, Treatment, and Visual Outcomes of Posterior Scleritis from Tertiary Eye Care Center.

    Tellioğlu A, Yargı Özkoçak B, Kemer Atik B, et al.

    Ocular immunology and inflammation 2024; (32(7)):1323-1329 doi:10.1080/09273948.2023.2241556.

    PMID: 37549312
  10. 10

    Clinical characteristics and efficacy of methotrexate in Japanese patients with noninfectious scleritis.

    Hiyama T, Harada Y, Kiuchi Y

    Japanese journal of ophthalmology 2021; (65(1)):97-106 doi:10.1007/s10384-020-00778-5.

    PMID: 33107015
  11. 11

    Intravenous cyclophosphamide therapy for patients with severe ocular inflammatory diseases who failed other immunomodulatory therapies.

    Karaca I, Tran EM, Park S, et al.

    Journal of ophthalmic inflammation and infection 2024; (14(1)):12 doi:10.1186/s12348-023-00372-z.

    PMID: 38466527
  12. 12

    Position statement of the Spanish Society of Pediatric Rheumatology on infection screening, prophylaxis, and vaccination of pediatric patients with rheumatic diseases and immunosuppressive therapies: Part 1 (screening).

    Cuadros EN, Calzada-Hernández J, Clemente D, et al.

    European journal of pediatrics 2022; (181(6)):2343-2354 doi:10.1007/s00431-022-04418-7.

    PMID: 35258699
  13. 13

    Canadian Association of Gastroenterology Clinical Practice Guideline for Immunizations in Patients With Inflammatory Bowel Disease (IBD)-Part 2: Inactivated Vaccines.

    Jones JL, Tse F, Carroll MW, et al.

    Journal of the Canadian Association of Gastroenterology 2021; (4(4)):e72-e91 doi:10.1093/jcag/gwab016.

    PMID: 34476339
  14. 14

    Methotrexate for the treatment of noninfectious scleritis.

    Sands DS, Chan SCY, Gottlieb CC

    Canadian journal of ophthalmology. Journal canadien d'ophtalmologie 2018; (53(4)):349-353 doi:10.1016/j.jcjo.2017.11.009.

    PMID: 30119788
  15. 15

    Anxiety and Depression among Patients with Uveitis and Ocular Inflammatory Disease at a Tertiary Center in Southern Thailand: Vision-Related Quality of Life, Sociodemographics, and Clinical Characteristics Associated.

    Sittivarakul W, Wongkot P

    Ocular immunology and inflammation 2019; (27(5)):731-742 doi:10.1080/09273948.2018.1484495.

    PMID: 29969331
  16. 16

    Incidence and Prevalence of Depression, Anxiety, and Suicidal Ideation in Patients with Uveitis and Scleritis in the TriNetX Database.

    Agarwal R, Lee D, Mendez Bermudez I, Berkenstock MK

    Ocular immunology and inflammation 2026; 1-9 doi:10.1080/09273948.2026.2633447.

    PMID: 41824366
  17. 17

    Reduced anxiety and depression predict improved health-related quality of life in school-based CBT.

    Lystrup PPT, Haugland BSM, Wergeland GJ, et al.

    Behaviour research and therapy 2025; (193()):104855 doi:10.1016/j.brat.2025.104855.

    PMID: 40929864
  18. 18

    Clinical profile of patients with posterior scleritis: A report from Eastern India.

    Kumar A, Ghose A, Biswas J, Majumder PD

    Indian journal of ophthalmology 2018; (66(8)):1109-1112 doi:10.4103/ijo.IJO_121_18.

    PMID: 30038152
  19. 19

    [Diagnosis and treatment approach for necrotizing scleritis (NS): A clinical case].

    Hernández-Camarena JC, Rodríguez-García A, Valdez-García J

    Gaceta medica de Mexico 2015; (151(4)):525-8.

    PMID: 26290030
  20. 20

    New Potential Weapons for Refractory Scleritis in the Era of Targeted Therapy.

    Fabiani C, Sota J, Sainz-de-la-Maza M, et al.

    Mediators of inflammation 2020; (2020()):8294560 doi:10.1155/2020/8294560.

    PMID: 32410867

This page is for informational purposes only and does not constitute medical advice. Your ophthalmologist and rheumatologist should tailor testing, medicines, and flare instructions to your situation.

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