PMR-GCA-UK reports that after years in the shadows, PMR (Polymyalgia Rheumatica) and GCA (Giant Cell Arteritis) are coming into the rheumatological spotlight. At the end of October, the national working group on sight loss caused by undiagnosed GCA met for the first time, encouraged by an endorsement from Earl Howe, the Minister of Health, who has acknowledged that as many as 1000 people a year in the UK may be losing their sight in both eyes because GCA isn’t picked up in time to avoid a ‘stroke in the eye’. Once the working group has reported in a few months’ time, on pilot ‘fast-track’ studies that are dramatically cutting the rate of blindness, the stage will be set for launching a major public and professional awareness campaign.
Last month saw the first international symposium on PMR and GCA, held at Anglia Ruskin University in Chelmsford, and co-organised by the BSR and Prof Bhaskar Dasgupta, Hon President of PMRGCAuk. The symposium was a resounding success, with hardly a vacant seat in the lecture theatre, and an array of research and new thinking presented about these mysterious and intractable conditions.
The morning session focused on PMR, with a range of presentations focusing on the biological action of the illness, developing alternative treatments, and discussing patient outcomes. The afternoon session presented recent research into GCA.
The patients’ voice was also heard in the afternoon, with Kate Gilbert, Chair of PMRGCAuk, giving some insights into the patients’ experience via data from our recent user survey. Although severe pain and paralysing stiffness are the characteristics of PMR and GCA most familiar to GPs (not to mention vision disturbance and the threat of sight loss) once under treatment, patients report that their chief preoccupations are avoiding side effects from long-term steroids, and getting off the steroids.
From the point of view of PMR-GCA-UK, there were two important outcomes from the day. The first was the news that ACR and EULAR have commissioned a set of international guidelines on PMR, and the working group is to be convened by Prof. Dasgupta, with the first meeting in Paris in April 2013. The second was the unmistakable consensus in the room that both GCA and PMR are connected to large vessel vasculitis. This could be the ‘missing link’ that explains why 40% of people with GCA also have PMR, and why an estimated 20% of people with PMR also have GCA.