Can a Structured Approach Change the Standard Rheumatology Visit?
For many people living with Sjögren’s disease, the hardest part is interacting with the healthcare system.
You might see a rheumatologist, an eye doctor, a dentist, maybe a neurologist or endocrinologist and still feel like no one has connected the dots.
You’re not imagining it. Sjögren’s is one of the most heterogeneous autoimmune diseases known.
Yet the way care is delivered often doesn’t reflect that complexity. Visits are short. Testing is fragmented. And because many symptoms are “invisible” to standard labs, patients often leave feeling unheard.
Over the years, I developed a clinical framework using a structured, step-by-step system to bring clarity and precision to a disease that often feels anything but. I call it the Sjögren’s Order of Operations (SOO).
Why Sjögren’s Needs a Framework
In most autoimmune diseases, physicians start with a lab result or a symptom, and treatment builds from there. But with Sjögren’s, symptoms can appear before blood tests turn positive, or lab results can stay abnormal even when a patient feels fine.
To make progress, you need a way to organize what’s happening both in the immune system and in daily life of the patient.
That’s what the SOO does: it provides a map that connects the biology of the disease with the patient’s lived experience.
A Nine-Step Structure for Clarity and Progress
The SOO begins with fundamentals such as confirming the diagnosis and mapping which organs and symptom domains are involved. It then builds toward long-term optimization and prevention.
Each step builds logically on the last, but the process is also iterative: we revisit earlier steps as new information emerges.
In brief, the steps are:
Establish confidence in the diagnosis.
Confirm Sjögren’s and distinguish it from overlapping or mimicking conditions.Map organ system involvement.
Identify where the disease lives: salivary glands, lungs, kidneys, nerves, skin, and more.Map symptom domains.
Capture fatigue, pain, dryness, dysautonomia, brain fog: the symptoms that shape quality of life.Assess activity, burden, and damage.
Separate active inflammation from residual or secondary symptoms to avoid both under- and overtreatment.Design an immunomodulation plan (if appropriate).
Align therapy with the dominant immune pathway or organ involvement.Design a symptom-domain plan.
Target fatigue, dryness, neuropathy or other symptoms through integrated strategies that combine medical and lifestyle approaches.Optimize modifiable health factors.
Address factors such as vitamin D, thyroid function, bone and metabolic health. This is the “terrain” on which immunity operates.Stabilize and minimize burden.
Reduce inflammation for as long as possible and fine-tune therapy for sustained balance.Prevent and anticipate.
Monitor for flares, complications, and long-term risks like lymphoma or interstitial lung disease.
The goal isn’t to rush through all nine steps, but rather to make sure nothing important is missed, and that decisions are always made in context.
The Evidence Behind a Structured Approach
While the SOO is my framework, it’s synthesized from elements of peer-reviewed, validated tools used worldwide in Sjögren’s research and clinical care. Some of those examples include:
The ESSDAI (EULAR Sjögren’s Disease Activity Index) for organ activity.
The ESSPRI (EULAR Sjögren’s Patient Reported Index) for symptoms.
Biopsy and disease classification criteria standardized by the American College of Rheumatology and EULAR.
Emerging biomarkers such as interferon signatures and B-cell markers.
Why This Matters for Patients
Without structure, Sjögren’s care often becomes reactive. Physicians are adjusting treatments after flares, trying medications sequentially, or chasing symptoms in isolation. With structure, every piece of information fits into a framework that drives decisions.
That leads to:
Fewer unnecessary medications, by distinguishing activity from damage.
Earlier detection of systemic involvement, before irreversible injury occurs.
Better alignment between how you feel and what your data show.
More control, because you can see your own progress in context.
A New Model for Care
I use the SOO as the foundation for how I work with patients. As you might imagine, it takes more time than a typical rheumatology visit. For many, taking the extra time worth it as it can transform years worth of medical uncertainty into clarity and control.
Sjögren’s isn’t a one-size-fits-all disease. It requires a thoughtful, individualized plan. That’s what the SOO is built to provide: a roadmap that connects science to experience, and structure to care.