Support for Polymyalgia and Giant Cell Arteritis Sufferers in Scotland
First face to face meeting
After a long period of meeting on a computer screen or not at all, Dundee Group are going to have their first face to face meeting since early in 2020. This will take place in St Mary’s Church in Dundee on Tuesday 23rd November at 11am. For details look at the home page of this website in the Group & Meeting Dates section.
NEXT ZOOM MEETING
Next zoom meeting is being planned and details will be ditributed by email. If you want to join these meetings and the charity (no charge) then please send an email to Secretary@PMRGCAScotland.com
Survey from University of Aberdeen
The study coordinator on the Nuffield Foundation funded research study RHEUMAPS, coordinated by the University of Aberdeen Epidemiology group sent the following message:
The RHEUMAPS Study wants to understand the healthcare priorities of those living with a rheumatic and musculoskeletal conditions and how these might differ in rural and urban communities. To do this, we’re inviting people to take part in a survey so that we can capture these priorities and identify the key differences in the both rural and urban populations.
The information gathered in this study will help us make recommendations to support health service planning.
The survey will ask a series of questions to help us understand people’s experiences and priorities for care. It should take about 20 minutes to complete and can be accessed here.
You can find out more about the study here.
Issue 34 (Summer 2021) of NewsWire is available at Issue 34. The paper copies were posted on Thursday 12th August. If your copy has not arrived please send an email to me at Secretary@PMRGCAScotland.com.
Next version of NewsWire (Issue 35) is planned to be posted around 13th December.
For previous versions of Newswire please see lower down this column.
LAST ZOOM MEETINGS
On Saturday 23rd October new members were welcomed and a general chat followed. The Meeting was very well received and requests for other meetings was made.
On Saturday 25th September 2021 at 11am a general chat took place with a discussion about the Aberdeen University Survey. No recording was made.
On Friday 19th March 2021 the annual meeting took place.
The talks were recorded with permission.
The talks were “GCA diagnosis and treatment in NHS Lanarkshire” by Dr Anna Ciechomska (https://vimeo.com/528577287) and
“Monitoring disease activity in large vessel vasculitis” by Dr Dan Pugh (https://vimeo.com/527908451).
Both very well received. They are excellent talks and we recommend that they are worth watching. Anna’s talk is about 50 minutes long and Dan’s about 45 minutes.
Talks were followed by the Annual General Meeting of the charity.
USE AMAZON ?
If you use Amazon, please logon using the following link https://smile.amazon.co.uk/ch/SC037780 and then a percentage of the money for Amazon supports us and doesn’t cost you anything.
If you have any suggestions for topic to be discussed, please get in touch with the Secretary (secretary @pmrgcascotland.com) or the Helpline (0300 777 5090) to add to this list.
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.
Copies of previous newsletters are available:
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.