Sneak peek of Sjogren's is Systemic
Updated: Aug 24, 2020
The new Sjogren’s is Always Systemic page lays a foundation that supports the importance of comprehensive Sjogren’s care. Sjogren’s is often thought as a nuisance dryness (sicca) disease. This outdated notion of a sicca-only version of Sjogren’s needs to be put to rest.
The reality is this:
Sjogren’s is always a systemic disease. It impacts the entire body, not just the moisture producing glands.
Patients who are monitored for complications and comorbidities are likely to have better outcomes due to earlier identification and treatment of serious problems. Sjogren’s is so complex that it is challenging even for rheumatologists to know every detail about the disease. Some Sjogren’s features tend to be overlooked due to being poorly understood or difficult to manage. Some systemic manifestations, even serious ones, may be present without obvious symptoms.
These things may surprise you:
Lung disease. Most (!) Sjogren’s patients have Sjogren’s-related lung disease, often without obvious symptoms.Yet only 10-20 % of cases are recognized. There are many types of Sjogren’s lung disease; interstitial lung disease appears to be the most common. Special tests are needed to detect many of these conditions. Not all lung disease requires treatment, but everyone with Sjogren’s lung disease should be monitored for progression.
Painful small fiber neuropathies and dysautonomias are the most common neurologic features seen in Sjogren’s. Both tend to be overlooked, or even blamed on psychological factors or called "functional neurologic disorder" because they are not picked up by a standard neurologic examination. Some clinicians are not aware that these are direct Sjogren’s manifestations.
General systemic features are often not counted as systemic. Fatigue, malaise, widespread pain and/or brain fog impact most patients. These symptoms can be devastating. They are the primary cause of functional impairment and reduced quality of life in Sjogren’s. Any patient can tell you that these symptoms are a whole body (systemic!) experience, not caused by sicca symptoms. Because they are poorly understood, they often go unaddressed during clinic visits.
What to do with this information?
The information in the new Sjogren’s is Always Systemic page does not specify what ongoing care should look like. It does not provide guidance on communicating with clinicians about this. Rather, this section provides important background for understanding ongoing care. A section about ongoing care is planned for a later date.
The main take-away for patients: Rheumatologists vary greatly when it comes to Sjogren’s care. It is important to find a rheumatologist who will manage Sjogren’s as a serious systemic disease.