Sjögren’s Awareness Month: Educate Patients, Families, Caregivers

Dr. Carteron loosely compares the landscape for Sjögren’s syndrome with the rheumatoid arthritis scene before biologic treatments were introduced. She acknowledges clinician frustrations in treating these patients, citing difficulties with insurance and authorizations. But she encourages rheumatologists to be the first responders for this patient population, many of whom go 10, 15, even 20 doctor visits before receiving a proper diagnosis.

“My message to my colleagues is that we are trained as internists first, so we are trained in every organ system. Rheumatologists have always been a subspecialty that is in a position to connect the dots [of symptoms to achieve a diagnosis],” Dr. Carteron said. “For difficult cases like Sjögren’s syndrome, we are in a great position to connect the dots if we are aware of what those dots might be.

“For example, there is data to suggest that maybe men are likely to even not have SSA/Ro antibodies or SSB/La antibodies. I see male patients referred to me with a negative SSA and SSB. They had horrible dry mouth and their teeth were falling out, but the physician told the patient that they could not have Sjögren’s syndrome. Those patients were never referred to a lip biopsy or other evaluation, which could have led to the Sjögren’s diagnosis.”

Dr. Carteron encourages rheumatologists to check out the new treatment guidelines, as well as related ACR and SSF resources.^3,5 She says deep dives into research will uncover most underlying autoimmune conditions.

“Rheumatologists may say, ‘I’m not a dentist’ or ‘I’m not an ophthalmologist,’ but they can connect those dots and send patients to a colleague who is very skilled in eye care,” she explains. “Or, if a rheumatologist doesn’t want to do a Schirmer test in their office, refer [patients] to an ophthalmologist who could.”

Richard Quinn is a freelance writer in New Jersey.

References

1. Sjögren’s Syndrome Foundation. About Sjögren’s. 2017.
2. Carsons SE, Vivino FB, Parke A, et al. Treatment guidelines for rheumatologic manifestations of Sjögren’s syndrome: Use of biologic agents, management of fatigue and inflammatory musculoskeletal pain. Arthritis Care Res (Hoboken). 69(4):517–527. doi: 10.1002/acr.22968.
3. American College of Rheumatology. Sjogren’s syndrome. 2017.
4. Sjögren’s Syndrome Foundation. Breakthrough goal: SSF launches five-year breakthrough goal. The Moisture Seekers. 2012 Jan 24.
5. Sjögren’s Syndrome Foundation. Brochures and resource sheets.