Sjögren’s: What I Learned from My Patients
May 3, 2023 | Sjogren’s
When I was in medical school, rheumatoid arthritis was the archetype poster child of autoimmune disease and was covered quite a bit. While Sjögren’s disease was included in the syllabus, it often seemed overshadowed by rheumatoid arthritis and lupus.
When I started in practice, I realized that Sjögren’s seemed even more common than rheumatoid arthritis―especially if you consider that Sjögren’s can often be primary or secondary to another autoimmune disease. Realizing this, I went back to the literature to better understand this not-so-rare autoimmune disease and educate myself more about it. Here are some of the things I have learned and now share with my patients.
Diagnosis Can Be Elusive
As I treated patients with Sjögren’s, I began to appreciate that their diagnosis was often elusive and confusing. For example, patients were often told they had the disease based on bloodwork (the presence of autoantibodies―Ro/SSA or La/SSB) when they did not have the clinical disease actually; or, they were told they did not have the disease based on the absence of these blood markers, despite the fact that the diagnosis can be made in the absence of these autoantibodies. I appreciated the confusion that patients felt and tried my best to clarify and help fill in gaps of understanding.
Lifestyle Choices Can Help Manage Common Symptoms
When it comes to the management of Sjögren’s, I learned from my patients the importance of lifestyle factors in combating one of the most common symptoms of Sjögren’s―fatigue. Some patients describe it as chronically feeling tired, while others describe it as overwhelming episodes that prevent them from their daily routines. To combat this, I often encourage patients to follow a healthy diet of fresh fruits and vegetables that are low in fat and added sugars. I also recommend regular sleep, moderate exercise and cutting out caffeinated products and alcohol if they have insomnia or sleep disturbances, which can also contribute to daytime fatigue.
Some Over The Counter Drugs Can Make Symptoms Worse
Sjögren’s is a chronic autoimmune disease that can affect the entire body. The majority of patients experience non-life-threatening symptoms of dry eyes, dry mouth, mild joint pain, and fatigue but otherwise live normal, healthy lives. Some over-the-counter medications, such as antihistamines can actually worsen the symptoms of dryness. For mild dry eyes, I recommend over-the-counter preservative-free eye drops and if possible, wearing glasses rather than contact lenses, if corrective lenses are needed.
Take Extra Care of Your Eyes and Teeth
Regular checkups with an ophthalmologist for eye exams and routine dental visits are recommended, given the involvement of the eyes and mouth in Sjögren’s. I also recommend regular follow up with a rheumatologist to monitor them.
Education is Power
I found that educating patients about the facts of this disease and providing reassurance that they can control many of the symptoms without the use of immunosuppressive medications was helpful to them in regaining a sense of control.
About the Author
Kristen Lee, MD
Dr. Kristen Lee is the Rheumatology Team lead in Medical Affairs, North America at Pfizer. She trained at NYU School of Medicine and was Assistant Professor there before she joined industry. At NYU, she saw a diverse group of patients with complicated autoimmune diseases and contributed to the education of fellows and faculty. She is also a fellow of the American College of Rheumatology (ACR) and serves on the Communications and Marketing Committee for the ACR. Dr. Lee’s interests include the pathogenesis of inflammatory arthritis and novel therapies for the treatment of autoimmune diseases. She is committed to the education of patients, fellows, and the rheumatology community. She lives in New York City.