PMR GCA Scotland

Support for Polymyalgia and Giant Cell Arteritis Sufferers in Scotland

Summer Newsletter

Issue 28 (Summer 2019) of NewsWire is available as a download – see below or use link HERE. Paper copies were posted on Tuesday 13th August. If your copy has not arrived yet, please email Secretary@pmrgcascotland.com.

AGM 2020

Best Western Queens Hotel Dundee 160 Nethergate, Dundee DD1 4DU Phone: 01382 322515 is booked for Friday 20th March 2020. Speaker is Dr Anna Ciechomska, Consultant Rheumatologist, NHS Lanarkshire. Keep the date in your diary.

AGM 2019

Very sucessful meeting in Glasgow on 12th April 2019. Speakers were Kate Gilbert PhD author of Polymyalgia and Giant Cell Arteritis: a survival guide and Mayrine Fraser, Service Delivery Lead/ Specialist Nurse from the Royal Osteoporosis Society.

ABERDEEN GROUP

On Friday June 14th a successful meeting was held at the Aberdeen Douglas Hotel to discuss setting up an Aberdeen Group. We are now looking for premises to hold a meeting on alternate months. More details to follow.

TOCILIZUMAB latest news…

The SMC (Scottish Medical Consortium) announced on Monday 10th September 2018, their approval for the use of tocilizumab (RoActemra®) for restricted use within NHSScotland. This drug may be used in the treatment of Giant Cell Arteritis (GCA) in adult patients subject to a 12 month clinical stopping rule.

This is the first new drug for GCA since steroids were first used 70 years ago. Thousands of patients have had no option up to now but to take high doses of steroids for several years.

The relevant Detailed Advice Document can be found here and a link to the Decision Explained public information summary can be found here .

The charity’s submission to the SMC can be found here.

The charity has been thanked for the considerable time and effort taken to capture the patient and carer perspective during the submission process.  We particularly thank Lorna for all her efforts and we welcome this decision.

To see the report on the trial of Tocilizumab in Giant-Cell Arteritis issued on 27th July 2017 go to  Research and clinical guidelines.