The Sjögren’s Foundation is proud to have led the creation of the first-ever Clinical Practice Guideline for Evaluation and Management of Peripheral Nervous System Manifestations in Sjögren's Disease. The guideline, published in the American College of Rheumatology’s journal Arthritis Care & Research, is a major milestone for the Sjögren’s community.
This important guideline provides clear recommendations to providers to help them better evaluate and manage the disease’s impact on the peripheral nervous system (PNS) — which can include symptoms like burning, tingling, numbness, stabbing pain, dizziness, balance problems, and more. For many people living with Sjögren’s, nerve-related symptoms like these can be some of the most debilitating or overlooked parts of the disease, as they may appear gradually, come and go, or be mistaken for anxiety or unrelated issues. The Sjögren’s Foundation hopes that the new guideline helps lead to earlier recognition and better coordinated care for Sjögren’s patients who have these symptoms.
You can access a pdf version of the guideline on the Sjögren’s Foundation website, along with other resources designed to support better care: View the Peripheral Nervous System Clinical Practice Guideline (PDF).
How Sjögren’s Impacts the Peripheral Nervous System
The PNS is the part of the nervous system made up of all the nerves that branch out from the spinal cord and run throughout the rest of the body. The peripheral nerves and brain send information back and forth via the spinal cord, and the PNS carries out commands coming from the brain.
When Sjögren’s affects the PNS, it can cause symptoms such as tingling, burning, numbness, nerve pain, or issues with digestion, bladder function, or blood pressure. Between 8% and 60% of people with Sjögren’s report PNS symptoms. What’s more, PNS symptoms can precede a Sjögren’s diagnosis in up to 90% of cases — underscoring that for many people, these symptoms begin long before their care team considers an autoimmune cause.
These symptoms can profoundly affect daily life, interfering with sleep, work, exercise, and basic activities. And without clear guidance for providers, patients often encounter challenges like delayed diagnosis or difficulty getting referred to the right type of specialist.
This is exactly what motivated the Sjögren’s Foundation to develop the new PNS guideline.
What is a Clinical Practice Guideline (CPG)?
A clinical practice guideline (CPG) is a carefully developed set of recommendations that help doctors diagnose and treat a disease or condition using the best available research evidence. They play an important role in improving care — especially for complex diseases like Sjögren’s that involve many different body parts or systems.
The Sjögren’s Foundation is one of very few nonprofit patient advocacy organizations to develop CPGs for medical providers, and we’re proud of our role in ensuring patients receive more consistent, evidence-based care for Sjögren’s disease.
Why the New PNS Guideline Matters
The new PNS CPG provides a clear roadmap for identifying, evaluating, and treating PNS manifestations of Sjögren’s. It introduces standard language and definitions to help reduce confusion and offers tools for doctors across specialties including neurologists, rheumatologists, and primary care providers. The recommendations are grounded in research, clinical expertise, and meaningful input from patients. Plus, they were guided by the Sjögren’s Foundation’s Living With Sjögren’s Patient Survey, which highlighted how often nerve-related symptoms affect daily life.
The guideline contains information to help the wide range of doctors who care for Sjögren’s patients recognize and treat PNS symptoms and manifestations. Because PNS symptoms often show up long before other Sjögren’s symptoms, providers like primary care doctors can play a critical role in early recognition.
The guideline includes:
- 31 best practices for diagnosing and evaluating PNS symptoms
- 20 evidence-based treatment recommendations
- Standardized names and descriptions for different types of neuropathies (nerve damage) to improve communication across specialties
For patients, this means your doctor will have a clearer map to follow — from recognizing and diagnosing PNS symptoms to treating them.
How the Sjögren’s Foundation Developed the Clinical Practice Guideline
The development of this guideline reflects years of careful work, collaboration, and patient advocacy by the Sjögren’s Foundation and our partners. The Sjögren’s Foundation launched its initiative to develop clinical practice guidelines more than a decade ago, with a goal to improve the quality of Sjögren’s care in the United States. The initiative brings together leading experts in evidence-based medicine, major medical organizations, practicing clinicians, and patient representatives.
The PNS guideline took nearly 5 years to complete and involved over 95 collaborators, including doctors across many specialties, researchers, and Sjögren’s patients. The Foundation used a rigorous, transparent process that included a literature review and structured evidence reviews. As part of the rigorous methodology, the group followed a consensus-building process to engage feedback from experts and ensure alignment across the recommendations.
Establishing the Guideline’s Credibility
A key step in establishing clinical practice guideline credibility — and helping to ensure doctors will follow the guideline — is peer review by other experts who weren’t involved in developing the guideline. In the case of the PNS guideline, it underwent a full peer-review process and was accepted for publication in Arthritis Care & Research, a highly respected rheumatology journal. Acceptance in such a journal reflects the strength of the evidence review, the quality of the guideline methodology, and the importance of the guideline in improving care for people with Sjögren’s who experience PNS involvement.
The guideline is open access, which means it’s free for anyone to read. The Foundation made this investment so that all providers and Sjögren’s patients can access the full recommendations without needing a subscription. We encourage all Sjögren’s patients to read the guideline and share it with their providers!
A Community Effort — and a Step Forward
The creation of the guideline is the result of a remarkable collaborative effort involving clinicians, researchers, patients, and Foundation staff. The Foundation thanks them for their collective effort and dedication to make this guideline possible.
But our work’s not done — the Foundation continues to invest time, staff, and resources to strengthen the care patients receive for nervous system manifestations. This effort reflects our long-standing commitment to the Sjögren’s community and our vision to increase awareness and understanding of nervous system involvement.
This is a major step forward — for Sjögren’s providers and patients alike.
Putting the Guideline Into Practice
We encourage all Sjögren’s patients to take a few minutes to read through the guideline. Understanding how the guideline describes PNS symptoms — and the steps doctors are encouraged to take to evaluate and treat them — can help you be more informed.
If you’re experiencing PNS symptoms, you may want to share the guideline with your care team so your providers have access to the same evidence-based recommendations. For example, bringing a copy to appointments can help you describe what you’re experiencing and help your doctor provide you with the right diagnosis and treatment.
You can access a pdf version of the guideline on the Sjögren’s Foundation website, along with other resources designed to support better care: View the Peripheral Nervous System Clinical Practice Guideline (PDF).
The Sjögren’s Foundation is proud to have led the creation of the first-ever Clinical Practice Guideline for Evaluation and Management of Peripheral Nervous System Manifestations in Sjögren's Disease. The guideline, published in the American College of Rheumatology’s journal Arthritis Care & Research, is a major milestone for the Sjögren’s community.
This important guideline provides clear recommendations to providers to help them better evaluate and manage the disease’s impact on the peripheral nervous system (PNS) — which can include symptoms like burning, tingling, numbness, stabbing pain, dizziness, balance problems, and more. For many people living with Sjögren’s, nerve-related symptoms like these can be some of the most debilitating or overlooked parts of the disease, as they may appear gradually, come and go, or be mistaken for anxiety or unrelated issues. The Sjögren’s Foundation hopes that the new guideline helps lead to earlier recognition and better coordinated care for Sjögren’s patients who have these symptoms.
You can access a pdf version of the guideline on the Sjögren’s Foundation website, along with other resources designed to support better care: View the Peripheral Nervous System Clinical Practice Guideline (PDF).
How Sjögren’s Impacts the Peripheral Nervous System
The PNS is the part of the nervous system made up of all the nerves that branch out from the spinal cord and run throughout the rest of the body. The peripheral nerves and brain send information back and forth via the spinal cord, and the PNS carries out commands coming from the brain.
When Sjögren’s affects the PNS, it can cause symptoms such as tingling, burning, numbness, nerve pain, or issues with digestion, bladder function, or blood pressure. Between 8% and 60% of people with Sjögren’s report PNS symptoms. What’s more, PNS symptoms can precede a Sjögren’s diagnosis in up to 90% of cases — underscoring that for many people, these symptoms begin long before their care team considers an autoimmune cause.
These symptoms can profoundly affect daily life, interfering with sleep, work, exercise, and basic activities. And without clear guidance for providers, patients often encounter challenges like delayed diagnosis or difficulty getting referred to the right type of specialist.
This is exactly what motivated the Sjögren’s Foundation to develop the new PNS guideline.
What is a Clinical Practice Guideline (CPG)?
A clinical practice guideline (CPG) is a carefully developed set of recommendations that help doctors diagnose and treat a disease or condition using the best available research evidence. They play an important role in improving care — especially for complex diseases like Sjögren’s that involve many different body parts or systems.
The Sjögren’s Foundation is one of very few nonprofit patient advocacy organizations to develop CPGs for medical providers, and we’re proud of our role in ensuring patients receive more consistent, evidence-based care for Sjögren’s disease.
Why the New PNS Guideline Matters
The new PNS CPG provides a clear roadmap for identifying, evaluating, and treating PNS manifestations of Sjögren’s. It introduces standard language and definitions to help reduce confusion and offers tools for doctors across specialties including neurologists, rheumatologists, and primary care providers. The recommendations are grounded in research, clinical expertise, and meaningful input from patients. Plus, they were guided by the Sjögren’s Foundation’s Living With Sjögren’s Patient Survey, which highlighted how often nerve-related symptoms affect daily life.
The guideline contains information to help the wide range of doctors who care for Sjögren’s patients recognize and treat PNS symptoms and manifestations. Because PNS symptoms often show up long before other Sjögren’s symptoms, providers like primary care doctors can play a critical role in early recognition.
The guideline includes:
For patients, this means your doctor will have a clearer map to follow — from recognizing and diagnosing PNS symptoms to treating them.
How the Sjögren’s Foundation Developed the Clinical Practice Guideline
The development of this guideline reflects years of careful work, collaboration, and patient advocacy by the Sjögren’s Foundation and our partners. The Sjögren’s Foundation launched its initiative to develop clinical practice guidelines more than a decade ago, with a goal to improve the quality of Sjögren’s care in the United States. The initiative brings together leading experts in evidence-based medicine, major medical organizations, practicing clinicians, and patient representatives.
The PNS guideline took nearly 5 years to complete and involved over 95 collaborators, including doctors across many specialties, researchers, and Sjögren’s patients. The Foundation used a rigorous, transparent process that included a literature review and structured evidence reviews. As part of the rigorous methodology, the group followed a consensus-building process to engage feedback from experts and ensure alignment across the recommendations.
Establishing the Guideline’s Credibility
A key step in establishing clinical practice guideline credibility — and helping to ensure doctors will follow the guideline — is peer review by other experts who weren’t involved in developing the guideline. In the case of the PNS guideline, it underwent a full peer-review process and was accepted for publication in Arthritis Care & Research, a highly respected rheumatology journal. Acceptance in such a journal reflects the strength of the evidence review, the quality of the guideline methodology, and the importance of the guideline in improving care for people with Sjögren’s who experience PNS involvement.
The guideline is open access, which means it’s free for anyone to read. The Foundation made this investment so that all providers and Sjögren’s patients can access the full recommendations without needing a subscription. We encourage all Sjögren’s patients to read the guideline and share it with their providers!
A Community Effort — and a Step Forward
The creation of the guideline is the result of a remarkable collaborative effort involving clinicians, researchers, patients, and Foundation staff. The Foundation thanks them for their collective effort and dedication to make this guideline possible.
But our work’s not done — the Foundation continues to invest time, staff, and resources to strengthen the care patients receive for nervous system manifestations. This effort reflects our long-standing commitment to the Sjögren’s community and our vision to increase awareness and understanding of nervous system involvement.
This is a major step forward — for Sjögren’s providers and patients alike.
Putting the Guideline Into Practice
We encourage all Sjögren’s patients to take a few minutes to read through the guideline. Understanding how the guideline describes PNS symptoms — and the steps doctors are encouraged to take to evaluate and treat them — can help you be more informed.
If you’re experiencing PNS symptoms, you may want to share the guideline with your care team so your providers have access to the same evidence-based recommendations. For example, bringing a copy to appointments can help you describe what you’re experiencing and help your doctor provide you with the right diagnosis and treatment.
You can access a pdf version of the guideline on the Sjögren’s Foundation website, along with other resources designed to support better care: View the Peripheral Nervous System Clinical Practice Guideline (PDF).