Giant cell arteritis (GCA) is a vascular condition characterized by ocular, systemic and neurological symptoms. Visual loss is the dreaded complication of this condition, prompting expedient diagnosis and treatment. Treatment typically involves prolonged glucocorticoid therapy which is often accompanied by several undesired side effects. In this report, we document one patient’s experience with GCA, its treatment, and relapse. Particularly, the patient highlights the difficulties and successes he had with the disease and its treatment. We also document the physician perspective on this disease and its treatment, specifically discussing the significance of prolonged treatment with glucocorticoids. We comment on the importance of patient experience and engagement in the setting of GCA and its management, particularly focusing on our recommendations of patient education over multiple visits and individualizing glucocorticoid treatment.

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework).