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PubMed This is a summary of 7 peer-reviewed journal articles Updated
Infectious Disease

Standard of Care Treatment for DILS

At a Glance

For diffuse infiltrative lymphocytosis syndrome (DILS), effective HIV therapy is the main treatment and may calm the overactive immune response, reduce swollen salivary glands, and relieve dryness. Steroids are generally reserved for severe or urgent inflammation affecting the lungs, kidneys, or nerves.

Treating Diffuse Infiltrative Lymphocytosis Syndrome (DILS) focuses on two main goals: calming the immune system’s overreaction by managing the HIV virus and managing the day-to-day symptoms of dryness and swelling [1][2].

Because DILS is an inflammatory response to the virus, the “fuel” for the condition is often related to HIV immune activation. Therefore, the foundation of treatment is effective HIV management [1].

The Foundation: Optimizing HIV Treatment

ART is essential HIV treatment. Antiretroviral Therapy (ART) should be initiated or optimized according to HIV treatment principles, adherence, resistance, interactions, and tolerability [1][3]. You should not change medication solely because of DILS without the HIV clinician.

  • How it Works: ART lowers the amount of HIV in your blood. When the virus is controlled, chronic immune activation is often reduced [1][4].
  • Results: In many cases, the swelling in the salivary glands begins to go down and the dryness improves as the viral load drops [1]. This improvement can take several weeks or even months to become fully apparent [4]. However, responses vary, and an undetectable viral load means controlled HIV, not that HIV is cured.

When Steroids are Necessary

While ART is the primary treatment for HIV, some patients may need additional help from corticosteroids (such as prednisone) [1]. These are powerful anti-inflammatory medications used to “quiet” the immune system.

Doctors typically reserve steroids for cases where the CD8+ cells have invaded vital organs (visceral involvement) and the situation is urgent [1][5]:

  • Severe Lung Involvement: If you have significant trouble breathing or a severe cough that does not improve with ART [1].
  • Kidney or Nerve Issues: When inflammation is actively damaging kidney function or causing neurological problems like facial paralysis [1][5].

A Note of Caution: Steroids must be used carefully in people living with HIV. Opportunistic infections and malignancy must be excluded before immunosuppression when clinically feasible. Some ART drugs—especially ritonavir- or cobicistat-boosted regimens—can interact seriously with systemic, inhaled, injected, or certain other corticosteroids and cause steroid excess or adrenal suppression. Never start, stop, or switch a steroid without the HIV clinician and prescribing specialist coordinating it [4].

Day-to-Day Symptom Management

The dryness caused by DILS (sicca symptoms) can be more than just an annoyance; it can lead to serious dental issues or eye damage if left unmanaged [2][6].

Managing Dry Mouth (Xerostomia)

Without enough saliva, your teeth are at a much higher risk for decay and your mouth is prone to infections like thrush (oral candidiasis) [6].

  • Hydration: Sip water frequently throughout the day, limit sugary or acidic drinks, and avoid alcohol-containing mouthwash.
  • Saliva Stimulants: Use sugar-free gum or lozenges containing xylitol as an adjunct to brushing and professional care.
  • Dental Care: Use a high-fluoride toothpaste only as directed by a dental professional, and visit your dentist based on your individual caries risk and the dentist’s assessment—this is often every 3–4 months for severe dry mouth [7]. Seek care for mouth pain, white patches, or sores.

Managing Dry Eyes

Severe dry eyes can lead to scratches on the surface of the eye (corneal abrasions) [2].

  • Artificial Tears: Use preservative-free eye drops several times a day.
  • Ophthalmology Review: Severe dry eye may need prescription treatments or other interventions. If you need drops frequently, have urgent eye pain, light sensitivity, or vision loss, you require an ophthalmologist’s review.

Building Your Care Team

DILS is a complex, multi-organ condition that often requires a team of experts working together [7]. Your care team should ideally include:

  • Infectious Disease Specialist: To manage your ART and monitor your HIV viral load.
  • Rheumatologist: To help manage the “Sjögren-like” inflammatory symptoms and oversee steroid use.
  • Organ Specialists: Depending on your symptoms, you may also need a pulmonologist (lungs), nephrologist (kidneys), or neurologist (nerves) [1].
  • Oral Medicine or Dentist: To focus on preserving your oral health despite the lack of saliva [7].

Common questions in this guide

What is the main treatment for DILS?
Effective antiretroviral therapy (ART) is the foundation of DILS treatment because it lowers HIV levels and can reduce the immune activation driving the syndrome. An HIV clinician should choose or adjust ART based on adherence, drug resistance, interactions, and tolerability; DILS alone is not a reason to change medicines.
How soon can HIV treatment improve DILS swelling and dryness?
Salivary-gland swelling and dry mouth or eyes may improve as the HIV viral load falls, but the change can take several weeks or months. People respond differently, and an undetectable viral load means HIV is controlled, not cured.
When might prednisone or another steroid be used for DILS?
Corticosteroids may be considered when DILS causes severe or urgent inflammation in an organ, such as significant lung disease, kidney injury, or nerve problems. When clinically feasible, clinicians should rule out opportunistic infections and cancer before suppressing the immune system.
Are steroids safe with HIV medicines?
Steroids can interact dangerously with some HIV regimens, especially those boosted with ritonavir or cobicistat. The combination can cause too much steroid in the body or suppress the adrenal glands, so never start, stop, or switch a steroid without coordination between your HIV clinician and prescribing specialist.
How can I protect my teeth when DILS causes dry mouth?
Sip water often, limit sugary or acidic drinks, and avoid alcohol-containing mouthwash. Sugar-free gum or xylitol lozenges may stimulate saliva, while fluoride toothpaste used as directed and regular dental visits help reduce tooth decay; ask a dental professional how often you need checkups.
What helps severe dry eyes from DILS?
Preservative-free artificial tears can relieve dry-eye symptoms when used several times a day. Frequent need for drops, urgent eye pain, light sensitivity, or vision loss warrants prompt ophthalmology review because severe dryness can damage the eye surface.
Which specialists may be part of DILS care?
An infectious disease specialist usually manages HIV treatment, and a rheumatologist may help with inflammation and steroid decisions. Depending on symptoms, pulmonology, nephrology, neurology, ophthalmology, and oral medicine or dental care may also be involved.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How will we optimize my Antiretroviral Therapy (ART) to ensure my viral load is as low as possible?
  2. 2.Is my current organ involvement (such as in my lungs or kidneys) severe enough to warrant starting corticosteroids now, or can we wait to see how I respond to ART?
  3. 3.If we start steroids, what is our plan to monitor for infections and manage potential side effects?
  4. 4.Can you coordinate my care with a rheumatologist or an organ specialist (like a nephrologist or pulmonologist)?
  5. 5.What specific dental products or saliva stimulants do you recommend to prevent tooth decay from my dry mouth?
  6. 6.How often should I have an eye exam with an ophthalmologist to monitor for damage from dry eyes?

Questions For You

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References

References (7)
  1. 1

    The diffuse infiltrative lymphocytosis syndrome (DILS). A comprehensive review.

    Ghrenassia E, Martis N, Boyer J, et al.

    Journal of autoimmunity 2015; (59()):19-25.

    PMID: 25660200
  2. 2

    Human immunodeficiency virus and salivary gland pathology: an update.

    Meer S

    Oral surgery, oral medicine, oral pathology and oral radiology 2019; (128(1)):52-59 doi:10.1016/j.oooo.2019.01.001.

    PMID: 30827854
  3. 3

    Benign Lymphoepithelial Cyst of Parotid Glands in HIV Infected Patients on Anti-Retroviral Therapy: A Narrative Review.

    Nkuna T, Maharaj S, Hari K

    Indian journal of otolaryngology and head and neck surgery : official publication of the Association of Otolaryngologists of India 2023; (75(2)):547-556 doi:10.1007/s12070-022-03372-y.

    PMID: 37274976
  4. 4

    [Efficacy of highly active antiretroviral therapy alone in the treatment of diffuse lymphocytic infiltration syndrome in an ivorian patient living with HIV: a case report].

    Cherif I, Tsevi YM, Bawe LD, et al.

    Medecine tropicale et sante internationale 2021; (1(3)) doi:10.48327/mtsibulletin.2021.118.

    PMID: 35686173
  5. 5

    An "All-in-One" Kidney Biopsy in AIDS: Crescentic Immune Complex-Mediated Glomerulonephritis, CD8-Driven Interstitial Nephritis, and Superimposed Thrombotic Microangiopathy.

    Sevaphai T, Surintrspanont J, Thammathiwat T, et al.

    Glomerular diseases 2026; (6(1)):216-221 doi:10.1159/000552365.

    PMID: 42404436
  6. 6

    Concurrent Perioperative Diagnosis of HIV in a Patient With Plunging Ranula: A Case Report.

    Abdullah MF, Abdul Rahman S, Fauzi FA

    Cureus 2023; (15(9)):e44832 doi:10.7759/cureus.44832.

    PMID: 37809267
  7. 7

    HIV-Associated Systemic Sclerosis: Literature Review and a Rare Case Report.

    Hasan S, Aqil M, Panigrahi R

    International journal of environmental research and public health 2022; (19(16)) doi:10.3390/ijerph191610066.

    PMID: 36011703

This page is for informational purposes only and does not constitute medical advice. DILS treatment, including HIV medicines and steroids, should be planned with your HIV clinician and relevant specialists.

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