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Shropshire

Contact: Joan and Sue

Tel: 0300 999 5090

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shropshire@pmrgca.org.uk

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Shropshire October Meeting notes

Group meeting 18th October 2019 Meeting Notes

The meeting was held at Ellesmere Town Hall and we welcomed 34 members and guests.  After the usual items on the agenda, we had time to listen to some new members' experiences of their PMR/GCA journeys to date. Again the prevailing theme is lack of diagnosis until after many months of suffering and then lack of information. We heard from 2 members who had travelled from Liverpool and the Wirral as there is no group closer than Shropshire!

A questionnaire was circulated asking for thoughts on next year’s meetup venues and speakers.  Shrewsbury is the most popular choice and so we will be looking for a venue that has sufficient parking and at a reasonable cost in or around Shrewsbury. Please let us know if you have a venue in mind that we can investigate.

We are collecting used postage stamps on behalf of the PMR/GCA UK charity so if anyone wishes to contribute please bring them to any meeting and they will be forwarded on to headquarters.

Our next meetup, on December 3rd, is a social get together and all are invited between 2pm and 5pm to The Beaten Track, Old Potts Way, Shrewsbury, SY3 7ET. (Adjacent to the 10 screen cinema). As this will be an informal get together there will be no ‘business’ so feel free to drop in and stay as long as you wish. Food will be available to order on an individual basis but there is no obligation as the area of the pub has been booked on the basis of ‘coffee and cake’ for individuals to purchase as they wish.

Please will you confirm if you wish to join us, no later than 26th November, by either email or phone, so our seats can be reserved.

A question was asked regarding renewal of membership to the charity, and the answer is, YES, you should receive a letter shortly before your renewal date and then a reminder 6 weeks later. If you’re concerned you may have been missed, please email Fran Benson at fran@pmrgca.org.uk

While refreshments were being served there was some more time for general discussion between members.

Professor Mark Garton
Then we welcomed our guest speaker, Professor Mark Garton, Consultant Rheumatologist from Wrexham Hospital.  Prof. Garton gave a very interesting talk regarding the past, present and possible future of diagnosis and treatments of both PMR and GCA and then answered questions. Sadly we ran out of time whilst there were still many questions waiting to be asked but Prof. Garten was happy to speak to any individuals who had time to stay behind.

Thank you to those who donated raffle prizes and a special thank you to Heather for donating 3 handmade patchwork cloth shopping bags, 2 were sold and the other, a larger organiser bag, was 1st raffle prize.  Thanks to the generosity of those attending our funds now stand at £106.08. This money will go towards funding future meetings, speakers and the general expenses of running a meetup group.

We look forward to meeting as many of you as possible on 3rd December and if not watch this space for details of next year's meetings.

A Summary of Professor Mark Garton's presentation:
Professor Mark Garton's presentation started with an image showing typical inflamed temporal arteries of GCA. He commented that GCA is not only observed in the temples but often involves tenderness of the scalp and the back of the head.
A brief history of PMR/GCA and the various names used for the condition was given. He outlined the development of drugs, especially steroids, used to control the symptoms. The current trials of Janus drugs, in particular Tocilizumab (TZB), and their ability to neutralise cells at the root of the disease, are looking positive. The professor thinks they will be the way forward.
We were shown a variety of scans and combined images which are set to replace biopsies. We were able to see how clearly the imaging showed the narrowing and blocking of arteries.
The prof. discussed research into causes and links to PMR/GCA. At first, there seemed to be a genetic link, but the condition is also found in married couples which suggests a different connection. There also appear to be links to chickenpox and the herpes zoster virus. A positive relationship was found between shingles vaccination especially when live vaccine is used. He was, therefore, keen for the NHS to use vaccine from the USA which uses dead cells taken from the shell of the virus.
He finished his presentation by emphasising the effect of steroids on our bones and the importance of Vitamin D and Statins.

Shropshire Meet Up Group - October 2019

Our October meeting will be on:

Friday 18th October
2pm - 4pm
Ellesmere Town Hall, 
1 - 3 Willow Street, Ellesmere, Shropshire, SY12 0AL

Venue telephone: 01691 622689

We will have a normal Meet-Up for the first 45 minutes, teas/coffees and then Professor Mark Garton will give a presentation at 3pm.  Professor Garton worked at the RJAH Orthopaedic Hosptial, and is now at Wrexham Mealor Hospital.

Professor Mark Garton's presentation will consider the NICE guidelines and other new drugs which might help sufferers going forward, as well as the diagnostic pathways and the British Society of Rheumatology draft guidelines which are still up for comment.  He will also say a little about what the disease is thought to affect older rather than younger people, how it usually presents and how the side-effects of conventional therapies can be mitigaed at least.

Please email shropshire@pmrgca.org.uk for more information and if you need any help to attend the meeting.  If you could let us know whether you can attend, it will help us know what numbers to expect.

Ellesmere is in North Shropshire and fairly easy to get to by car.  There is plenty of parking - free at the town hall, and very reasonable in the car park immediately adjacent.  Ellesmere is a pretty town - why not come earlier and have lunch in town, or at the Boathouse overlooking one of the meres.

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