More Than Dry Eyes and Dry Mouth

Understanding Sjögren's, an autoimmune disease affecting millions

In the 1920s, a Swedish ophthalmologist named Henrik Sjögren carefully documented a pattern he kept seeing in his patients — dry eyes, dry mouth, joint pain — and published his findings. His colleagues largely ignored him for nearly two decades. It wasn’t until 1943, when his work gained wider recognition, that the medical community began to take it seriously. A century later, the disease that bears his name affects an estimated 3-4 million people in the U.S. alone, yet most people have never heard of it. It is routinely overlooked, chronically underdiagnosed, and most likely to affect the people medicine has historically taken least seriously: women, roughly nine to ten times more often than men, typically around the age of menopause. It’s also the latest condition we’re covering in our ongoing autoimmune series, following rheumatoid arthritis, lupus, and multiple sclerosis.

Sjögren’s disease (pronounced SHOW-grenz) is a chronic, systemic autoimmune condition that primarily affects the glands that produce saliva and tears, but its effects extend well beyond dry eyes and dry mouth. It can cause dryness throughout the body, systemic inflammation, severe fatigue, joint pain, and, in some cases, organ involvement. It can occur on its own or alongside other autoimmune diseases like lupus or rheumatoid arthritis, and it presents differently in nearly every person who has it.

We asked Dr. Kara Wada, a board-certified allergist and immunologist who lives with the diagnosis herself, to help us tell this story. Let’s discuss…

“I (Kara) can trace symptoms of Sjögren’s disease back nearly a decade before I was diagnosed—subtle at first, then progressively harder to ignore. Like many, I didn’t fit the classic picture right away, and my labs were initially unrevealing. Having lived through that diagnostic delay myself, I now see it reflected in my practice. A large portion of my patients are navigating the same uncertainty, especially those who are seronegative (meaning their blood tests don’t show the antibody markers typically associated with the disease). These patients are clearly unwell, yet often lack the diagnostic validation to prove it. There’s often a long stretch between ‘something isn’t right’ and having language or validation for what’s happening in your body, and I know firsthand how isolating that gap can be.

After my diagnosis, I did what many patients do: I tried to do everything ‘right.’ That included exploring supplements and wellness strategies, one of which led to significant liver inflammation requiring biopsy and further evaluation. It was a stark reminder that ‘natural’ doesn’t mean safe, and that patients with autoimmune disease need guidance from clinicians who understand the complexities and can weigh the risks of every intervention, including the ones marketed as harmless. At the same time, I’ve chosen to participate in clinical research, which has given me a different kind of hope rooted in progress and possibility. If I could offer one thing to others navigating Sjögren’s, it would be this: your experience is real, even if it doesn’t fit neatly into a textbook, and finding the right clinical and personal support can change the entire trajectory of living with this disease.”

When the immune system goes wonky

In Sjögren’s disease, the immune system mistakenly targets the body’s own moisture-producing glands as threats and attacks them, gradually destroying the cells that keep them functioning. The damage reduces saliva and tear production, but the deeper problem is what’s driving that attack.

Sjögren’s is characterized by hyperactivity of B cells (immune cells that produce antibodies). In Sjögren’s, those B cells go into overdrive, generating autoantibodies (antibodies that mistakenly target the body’s own healthy tissue) that fuel inflammation throughout the body and raise the risk of certain B-cell-related cancers, including B-cell lymphoma.

Like most autoimmune conditions, Sjögren’s develops from a combination of factors:

Genetics: Certain variants in HLA genes (the genetic instructions that help your immune system distinguish “self” from “foreign”) appear to increase the risk of Sjögren’s. In people with these variants, the immune system is more likely to flag healthy cells as threats — a little like accidentally putting your own photo on a wanted poster instead of the thief’s.

Environmental triggers: The strongest environmental evidence points to two viral infections: Epstein-Barr virus (EBV), the virus behind mono — the “kissing disease” familiar to most middle and high schoolers — and cytomegalovirus (CMV), which typically causes mild symptoms in healthy people but can be serious for fetuses and those with weakened immune systems.

Hormonal factors: Sjögren’s is far more common in women, and its onset often clusters around menopause, when hormone levels are shifting, suggesting a hormonal component that researchers are still working to understand.

What Sjögren’s disease looks and feels like

One of the reasons Sjögren’s goes undiagnosed for so long is that its symptoms are easy to explain away. Dry eyes? Allergies. Fatigue? Stress. Joint pain? Getting older. Symptoms tend to develop gradually and subtly, and no two people experience them the same way, which means the full picture can take years to come into focus.

The most recognizable symptoms center on dryness: eyes that feel gritty, burning, or painfully sensitive to light; a dry mouth that makes swallowing difficult and eating uncomfortable; and dental problems that seem to come out of nowhere, because saliva plays a key role in protecting teeth. Persistent, sometimes crushing fatigue and joint pain or stiffness round out what most people consider the “classic” presentation.

But Sjögren’s doesn’t stop there. For many patients, the disease reaches well beyond the eyes and mouth:

• Skin: dryness, rashes, or vasculitis

• Lungs: shortness of breath and a persistent dry cough (interstitial lung disease, which develops in up to 20% of patients)

• Kidneys: reduced kidney function, which can affect fluid balance

• Nervous system: numbness, weakness, or pain in the hands and feet

• GI tract: reflux, bloating, constipation

• Cancer risk: elevated risk of lymphoma

The result is a disease that can look entirely different from one person to the next, making it hard to recognize and diagnose, and easy to dismiss.

Piecing together a diagnosis

There is no single test that confirms Sjögren’s disease. Diagnosis is based on a combination of symptoms, lab results, and gland function tests. It’s a process that can take time and, for many patients, multiple clinicians.

Part of what makes it so difficult is that symptoms overlap with dozens of other conditions. Some patients are seronegative, and for those patients especially, the path to diagnosis can be long, lonely, and deeply frustrating. We know that many people living with chronic, unexplained symptoms are desperate for answers, and for the validation that comes with them. A diagnosis doesn’t resolve the disease, but it resolves something.

When clinicians are piecing it together, they typically look at:

• Blood tests for autoantibodies commonly associated with Sjögren’s, including Anti-Ro/SSA, Anti-La/SSB, and ANA. ACPA and RF may also be tested to help rule out rheumatoid arthritis.

• Eye tests to measure tear production (Schirmer test)

• Salivary gland tests (sialometry) to measure saliva production, and sometimes a small biopsy from the lower lip to check for signs of inflammation

• Ultrasound imaging of the affected glands

How is Sjögren’s disease treated?

So, the clinician has pieced together a diagnosis. What comes next? There is currently no cure for Sjögren’s, so treatment focuses on managing symptoms, controlling inflammation, and preventing complications before they progress.

Symptom management

• Artificial tears or saliva substitutes: Prescription eye drops like Restasis and Xiidra can help with dry eyes, while saliva substitutes can help with dry mouth.

• Medications to stimulate gland secretion: Drugs like Salagen or Evoxac increase saliva production by mimicking a signaling molecule that stimulates secretion, though they can cause side effects like sweating and abdominal pain.

• Regular preventive care: Routine eye care and dental visits matter more than usual here, since dry eyes and dry mouth both create conditions for complications to develop quietly.

Treatments beyond the eyes and mouth

Many of the medications used for systemic Sjögren’s are prescribed “off-label,” meaning they were developed for other conditions but are widely used for Sjögren’s because the underlying biology overlaps. Off-label use can sometimes affect insurance coverage, but most of these treatments are well-established in clinical practice.

• Disease-modifying anti-rheumatic drugs (DMARDs) help slow joint damage and inflammation and include:

  • Immune modulators like hydroxychloroquine for fatigue and joint symptoms

  • Immune suppressants like methotrexate and mycophenolate for organ involvement

• Biologic DMARDs are a newer class that target specific components of the immune system rather than broadly suppressing it. They are usually reserved for more severe cases and include:

  • Rituximab, an antibody that depletes B cells, with mixed results in Sjögren’s.

  • Benlysta, which inhibits B cell activity.

  • Orencia, which works by preventing T cell activation and reducing glandular inflammation.

• Corticosteroids are used to rapidly suppress inflammation during flares but are generally avoided for long-term use due to side effects like osteoporosis.

New treatments in development

The treatment landscape for Sjögren’s is changing fast:

• Ianalumab has shown promise in phase III trials as a biologic targeting B-cell activity, one of the key drivers of Sjögren’s.

• Nipocalimab blocks a receptor involved in antibody production, aiming to reduce the autoantibodies that worsen the disease.

• Dazodalibep is being evaluated for its ability to interrupt interactions between immune cells that trigger inflammation.

• BTK inhibitors and JAK inhibitors are small-molecule drugs that target B-cell signaling proteins to reduce B-cell activity and dampen inflammatory pathways.

• Several gene and cell therapies are also in early development for Sjögren’s.

Final Thoughts

Sjögren’s has spent long enough in the shadows. It is common, it is complex, and for too many people, it goes unrecognized for years while they search for answers that feel just out of reach. If nothing else, we hope this piece raises awareness, because recognition is where everything starts. You cannot advocate for a diagnosis you have never heard of, and you cannot push for research funding for a disease the public doesn’t know exists.

But the science is catching up. From better diagnostic frameworks to a growing pipeline of targeted biologics and cell therapies, Sjögren’s is finally getting the research attention it has long deserved. Progress in medicine rarely arrives all at once. It comes through better tools, sharper definitions, and a deeper understanding of the biology underneath. That work is happening, and it is accelerating. Thank you, science!

Stay Curious,

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Resources for Sjögren’s support

Support resources:

https://www.sjoutforsjogrens.com/

https://www.mysjogrensteam.com/

https://www.sjogrensadvocate.com/

General Sjögren’s resources:

https://sjogrens.org/

https://www.hopkinssjogrens.org/disease-information/

https://rheumatology.org/patients/sjogrens-disease

https://www.niams.nih.gov/health-topics/sjogrens-disease/more-info