PMR GCA Scotland

Support for Polymyalgia and Giant Cell Arteritis Sufferers in Scotland

AGM 2020

The 2020 Annual General Meeting of PMR-GCA Scotland is to be held at the Best Western Queens Hotel Dundee (160 Nethergate, Dundee, DD1 4DU) in the afternoon on Friday 20th March 2020.

Book by clicking HERE

The timetable is:

12:30 Registration followed by Buffet Lunch and tea/coffee

13:30 AGM

14:00 Talks with time for questions after each talk.

  1. PMR and GCA diagnosis and treatment in Lanarkshire by Dr. Anna Ciechomska, Consultant Rheumatologist, NHS Lanarkshire
  2. Novel imaging techniques for large vessel vasculitis by Dr. Dan Pugh, Clinical Research Fellow, University of Edinburgh

15:30 Tea/Coffee and informal discussions,

16:30 Depart

We hope that you are able to attend and hear about the latest progress on diagnosing and treating PMR and GCA.

Book by clicking HERE



NHS NATIONAL SERVICES SCOTLAND Request

GCA is classified as a Rare Disease by the NHS. Please read the invitation to take part in the research study described below.

CONCORD (Coordinated Care of Rare Diseases) is a research study looking at

how care of people with rare diseases is coordinated in the UK and how patients, families and healthcare professionals who treat rare diseases would like care to be coordinated.

The research team are recruiting patients, parents and carers for and are keen to hear a Scottish perspective. Please see here for details.

Please complete the Versus Arthritis Survey

A recent study of clinical trials in the UK suggests:

·         31% were able to recruit enough people to take part in research.

·         This means that 69% of clinical trials could fail due to issues with recruiting enough people.

This is why we’re doing this survey as we want to better understand people’s experiences of taking part in research, and to help support people to take part more easily.

Together we can make progress

Join us in making a positive difference for people living with arthritis and other similar conditions such as PMR/GCA and complete our survey today.

The survey will take 15-20 minutes to complete and your views will help shape our support.

WINTER NEWSLETTER Issue 29 (Winter 2019) of NewsWire is available as a download  HERE. Paper copies were posted on Thursday 28th November. If your copy has not arrived yet, please email Secretary@pmrgcascotland.com.

PAST NEWSLETTERS

Copies of the last few newsletters are available:

2019 December Issue 29, August  Issue 28, April Issue 27

2018 December Issue 26, August Issue 25, April Issue 24

2017 December Issue 23, August Issue 22, April Issue 21

NEW GCA GUIDELINES 2020

Giant cell arteritis affects the blood supply to the scalp, jaw muscles or the back of the eye. If left untreated, it can lead to blindness or stroke. Our updated guideline on its treatment ensures clinicians have the latest information about diagnosis and treatment, bringing the latest peer-reviewed evidence up-to-date and supporting clinicians in providing the best treatment for people with this disease. Our guidelines team worked with over 35 national and international experts in the field, including rheumatologists, GPs, ophthalmologists and patients, to update the guideline. This involved a rigorous process, using a framework for evidence appraisal called GRADE, coupled with our BSR Guidelines Protocol, which is endorsed by NICE. Guideline co-lead Dr Sarah Mackie, Associate Clinical Professor in Vascular Rheumatology at the University of Leeds, co-led the development of the guideline. She explains: “The way patients with suspected GCA have been assessed and treated has been variable across the UK. Giant cell arteritis is very time critical; a delay in starting high-dose steroid treatment can cause blindness, but this same treatment can also cause serious side-effects, so this is not a matter to be taken lightly. “We recommend that all patients are referred to a specialist who can see them promptly – on the same working day if possible and in all cases within three working days.”

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.