PMR-GCA Scotland

Support for Polymyalgia and Giant Cell Arteritis Sufferers in Scotland

Members’ Day and AGM 2022

The Members’ Day and AGM 2022 was held via Zoom on 25 March 2022. (A recording of the meeting is not available).

The meeting opened with an excellent, well received presentation by Dr Sarah Mackie, entitled ‘Progress in PMR’. After which Sarah kindly answered many members questions. Our thanks to Sarah for the time taken and her continued support for the charity.

Following the meeting our founder, Jean Miller, commented:

“Having just attended the 16th AGM of PMR-GCA Scotland on 25/03/22, I realised how far the charity had come. I founded it, but with very limited skills. It is thanks to the skills of those who came after me that the charity has expanded and developed beyond my wildest dreams for which I am truly grateful. I wish the current and future Trustees and Management team all the skills and support they need to keep the charity developing and expanding.

Good luck!”

As part of the development Jean refers to, the meeting approved the change in the legal form of the charity to a SCIO. This will not affect the visible operation of the charity and the support it provides. However, it will take time to transfer the bank account and make other technical changes. Once completed members will be informed of the automatic transfer of their membership to the new SCIO and given the opportunity to decline the change.

Results of the University of Aberdeen Voices Study – Systemic Vasculitis

As GCA is a Systemic Vasculitis many members, including those with PMR, will relate to the points made by patients.

The Voice Study undertaken by the University of Aberdeen results can be found at:

http://healthtalk.org/Systemic-Vasculitis

http://healthtalk.org/Systemic-Vasculitis-catalyst-film 

It features 32 people from across the UK talking about their experiences of vasculitis and healthcare, organised into 28 topics. There is also a ‘catalyst film’ to support conversations about healthcare improvement.

WINTER NEWSLETTER

Issue 35 (Winter 2021) of NewsWire is available at Issue 35.

Paper copies were posted on Thursday 16th December second class and are expected to be received before Christmas Day. If your copy has not arrived by the New Year then please send an email to secretary@PMRGCAScotland.com.

For previous versions of Newswire please see lower down this column.

RECORDED TALKS

“GCA diagnosis and treatment in NHS Lanarkshire” by Dr Anna Ciechomska (https://vimeo.com/528577287)

“Monitoring disease activity in large vessel vasculitis” by Dr Dan Pugh (https://vimeo.com/527908451).

 

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SUGGESTIONS PLEASE

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.

PREVIOUS NEWSLETTERS

Copies of previous newsletters are available:

2021 December Issue 35, August Issue 34, April Issue 33

2020 December Issue 32, August Issue 31, April Issue 30

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

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.