PMR GCA Scotland
Support for Polymyalgia and Giant Cell Arteritis Sufferers in Scotland
Following a couple of successful regional zoom meetings, the charity is holding 3 Autumn meetings by Zoom open to any members. To join the charity if you are not a member please email Secretary@PMRGCAScotland.com.
Numbers will be restricted, the meeting will last for about an hour and will start with a talk which will be available here until the end of 2020. A discussion follows which is not recorded.
The dates are:
- Wednesday 16th September at 11am Subject of talk “GCA – the symptoms and the Fast Track”.
- Friday 16th October at 11am– “Tocilizumab (TCZ) – new hope”.
- Monday 16th November at 11am on “Adrenal insufficiency”.
Recordings (which do NOT cover the discussions afterwards) can be accessed by clicking the date below:
16th September Use Passcode: kUCsM%96
COMING SOON – FAQs.
Do you have a question that relates to many sufferers? If so, please send to Secretary@PMRGCAScotland.com. We will not include them all but will pick out the questions that affect most people. Watch this space.
Please complete two very quick on-line polls for Health Unlocked.
The AGM will be held in Dundee on Friday 19th March 2021.
More details will follow.
Prednisolone doses in the event of infection
Dr Sarah Mackie is an established friend and supporter of the UK charities and she has compiled a leaflet about prednisolone doses in the event of coronavirus infection. The document can be found here.
HELP WANTED FOR SURVEY
Two Health Psychology masters students from the University of Aberdeen and are currently looking for people to answer questions exploring treatment burden. They are looking for adults with one or more long-term health conditions to take part in a survey evaluating the effectiveness of questionnaires on burden of treatment. The questionnaire will take about 30 minutes to complete and there is the option for individuals to enter a prize draw for a £40 Amazon voucher.
Issue 31 (Summer 2020) of NewsWire has been posted and is available as a download HERE. Paper copies were posted on Wednesday 19th August. If your copy has not arrived yet, please email Secretary@pmrgcascotland.com.
AGM 2020 – Held by email and post
The 2020 Annual General Meeting of PMR-GCA Scotland was held at the email and post on Friday 20th March 2020.
Following the delay of the conference planned for the Queens Hotel Dundee on Friday 20th March 2020, the Trustees decided to hold the AGM by email and post. The secretary contacted by email or post, the people planning to attend the AGM to inform them of the postponement of the Conference and the new plan for the AGM. The Secretary also contacted all members with a valid email address to notify them of the plan. The contacts were asked to vote on the AGM resolutions by email or post. 50 replies were received. Thank you to all you contributed.
We have decided to delay the conference for a year and hope that life has returned to normal by then. The date is Friday 19th March 2021 in Queens Hotel Dundee. More details will follow in due course.
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.
Note that it is possible that this study has closed. It is not obvious from the link but there is a contact available if you want to try to join.
GCA GUIDELINES for patients
This summary based on the BSR GCA guidelines (see below) was written by Sarah Mackie, Keith Slater and Lorna Neill.
It is a short summary of the new British Society for Rheumatology guidelines on giant cell arteritis written for patients.
The authors of the guidelines, a group of leading medical experts on the condition together with patient representatives, divided their report into two sections: general principles and key recommendations for use by patients.
The summary can be found here
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.