Primary Sjögren's syndrome: a subjective description of the disease

Forty patients with primary Sjögren's syndrome were interviewed to clarify the onset and course of the disease. In 50% of the cases, the first subjective signs of disease were recorded at age 30 to 50 years. A large variation was, however, observed, and some patients even recalled symptoms as early as in childhood. About one third described the onset as sudden, whereas the rest described an insidious deterioration. Keratoconjunctivitis sicca was the most frequent debut symptom, followed by xerostomia and weariness. Regardless of age, extreme weariness was a major problem. Pain in joints and muscles tended to be more severe in younger patients; ocular and oral problems tended to be more severe the higher the age of debut. Finally, most patients eventually came to have more or less the same complex of symptoms, which could lead to a devastating condition affecting the patients not only physically but also psychically and socially. The large variety of symptoms could easily be overlooked or misinterpreted, and because the patients did not appear to be ill, diagnosis was first established after an average period of nine years. Most patients used artificial tears, and obtained significantly greater benefit from this remedy than from all other drugs. A certain familial disposition towards the disease was found.