PMR-GCA Scotland

Support for Polymyalgia and Giant Cell Arteritis Sufferers in Scotland

LAST ZOOM MEETING

PMR-GCA Scotland’s last zoom meeting was held on Saturday 20th February 2021.
Richard Cuthbert led a discussion on “Steroid reduction”. Very well received. A recording of the session is available to members. To join email Secretary@PMRGCAScotland.com.
 

NEXT ZOOM MEETING

Annual Meeting with AGM on Friday 19th March 2021 on-line using zoom starting at 2pm. The finish time will be before 4:30pm.

Includes 2 talks:

GCA diagnosis and treatment in Lanarkshire by Dr. Anna Ciechomska, Consultant Rheumatologist, NHS Lanarkshire

Novel imaging techniques for large vessel vasculitis by Dr. Dan Pugh, Clinical Research Fellow, University of Edinburgh

Followed by AGM

Open to members. To join email Secretary@PMRGCAScotland.com.

 
Study about GCA being run by Aberdeen University

The Trustees of PMR-GCA Scotland would like you to consider participating in the study about GCA being run by Aberdeen University as per the sheet here.

As you know GCA is one of the conditions grouped under the label of vasculitis.

This is an important study that will shape the treatment of GCA for many years. All you will be asked to do is be interviewed about your experiences of GCA and you will receive a shopping voucher as a thank you.

The only requirement is that you have (or had) GCA and have access to the internet.

If you are able to contribute (and we hope that you can) please contact Avril Nicoll directly at:

Email:                  voices@abdn.ac.uk

Telephone:         07741 900965 (or 01224 438083)

Address:              Avril Nicoll, Health Services Research Unit, University of Aberdeen, 3rd Floor, Health Sciences Building, Foresterhill, Aberdeen, AB25 2ZD

For more information see their website: www.abdn.ac.uk/iahs/research/epidemiology/vasculitis-1616.php

Email or phone contact would be best… all you need to say is:

I am interested in taking part in the “Personal experiences of health and illness” study called Voices of Vasculitis.

I have/had GCA and supply your details i.e. Name, Postal Address, Email address and Contact number (either mobile or home or both would help)

PAST ZOOM MEETINGS

A PMR-GCA Scotland’s zoom meeting was held on Saturday 16th January 2021.
Lorna Neill spoke on “Activity levels – What’s possible with PMR/GCA ?”.
The meeting was well full and very well received. If you want to watch the meeting click here and enter passcode #R8PRUbZ.

Activity suggestions for those with PMR and GCA when the symptoms are well-controlled.

Remember: Do what you can; Stop when you can’t; Rest in between.

 Seated exercises

Gardening
All normal housework (Use it as an opportunity to stretch and bend)
Walking
Cycling outdoors or on a stationary bike
Nordic walking (with poles)
Swimming
Aquafit or aqua-aerobics
Rebounder (mini trampoline)
Tai Chi
Line dancing
Massage
Physiotherapy

PilatesBowen therapy

The above have all been recommended by members but please make sure that any instructor or therapist is knowledgeable about your illness and the effects of steroids on muscle and tendons.

If you have any other suggestions 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.

WINTER NEWSLETTER

Issue 32 (Winter 2020) of NewsWire has been posted. Should be with you by Monday 14th of December. If yours hasn’t arrived by 21st December then email Secretary@PMRGCAScotland.com.

An electronic copy that you can print is available HERE.

PAST NEWSLETTERS

Copies of the last few newsletters are available:

2020 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.