Living Well with a Rare Autoimmune Disease, MPO-ANCA Vasculitis: A Patient’s Perspective on Shared Decision-Making and Individualised Care

This article presents one person’s experience of living well with a rare autoimmune disease MPO-ANCA vasculitis and reflects on the role of collaboration between patient and healthcare professionals in managing a chronic autoimmune disease. It describes my journey from a life-threatening diffuse alveolar haemorrhage to sustained remission while taking a low daily dose of prednisone (5 mg) following initial high-dose prednisone treatment. I also describe a collaboratively developed, patient-initiated “short-and-sharp” prednisone protocol, used at the earliest signs of a suspected flare under specialist guidance, and its role in my long-term disease management. This personal perspective discusses the potential benefits and challenges of shared decision-making, individualised care, and patient engagement, particularly where access to newer steroid-sparing therapies may be limited. This article describes my individual experience, supported where appropriate by the published literature, and is not intended as medical advice or as evidence of a treatment strategy applicable to other patients.