A Special Meeting in Truro

[Pollyanna16]

The Truro Support group normally meets monthly on the 2nd Monday at Truro Golf Club. However, this month, we are very pleased to rearrange this month’s meeting until Tuesday 12th July as Dr Hughes has kindly invited us to meet with Professor Dasgupta, a leading authority of PMRGCA & President of PMRGCAUK at the County Arms,Highertown, Truro TR1 3PY. This will follow a meeting of all regional rheumatology departments. Our meeting is planned for 4.30pm. Please, contact [e-mail] if you’d like to attend & any final arrangements will be sent to you. Look forward to meeting you there.

[PMRpro Ambassador]

Oh what a promising group meeting! Well worth rearranging - do enjoy it.

[Pollyanna16 in reply to PMRpro]

Thank you it’s rather exciting, especially as we are so far down West!

[PMRpro Ambassador in reply to Pollyanna16]

That is Mark Hughes I assume? What's he like?

[Pollyanna16 in reply to PMRpro]

Yes it is. I have no experience of him as a doctor but he came to a support group meeting a few months ago & was keen to keep in touch. He seemed very committed & particularly interested in developing ultra sound as a tool to diagnose GCA. Also very young he went To school here with my son which is a bit surreal!

[PMRpro Ambassador in reply to Pollyanna16]

Urrrghhh ... Mind you - my super rheumy looks about 15! Met his junior colleague this week - tall, typically dishy Italian but he only looks in his early 20s!

[Pr0jection in reply to Pollyanna16]

Interesting about developing ultra sound to diagnose GCA. My rheumatologist, who worked in a Greek teaching hospital for auto immune disorders told me that they always used ultra sound to diagnose GCA, and was surprised that it wasn't used in Cyprus.

[PMRpro Ambassador in reply to Pr0jection]

I've just been involved in the development of a training programme for increasing the number of people able to offer it in the NHS. There are two options for techniques and they want to find which is best for both operators and patients. Been quite interesting so far.

[Pollyanna16 in reply to PMRpro]

That’s very interesting I know of a couple of people who have not “enjoyed” their biopsy at all & Mark is keen to by pass that if at all possible.

[prunus in reply to PMRpro]

I was very interested to read that. I have made my feelings clear at our local hospital whenever the opportunity has arisen that scans are superior to invasive biopsies in my opinion.

[tina-shelley in reply to PMRpro]

Hi PMR Pro, I've had experience of Mark Hughes. Can you believe that I've now been diagnosed with RA so was referred to Rheumatology. He's very professional yet very easy to talk to and he listens to all your explanations, symptoms and timeline of medical issues. I received a through examination too including ultrasound of my hand joints. Very pleased with him and I really do think that he's a wonderful addition to the department.

[PMRpro Ambassador in reply to tina-shelley]

That is good to hear. You need someone good down there.

Sorry to hear that - did he think the PMR was actually a precursor to the LORA, a polymyalgic onset?

[tina-shelley in reply to PMRpro]

Yes he did. My hands actually look ok it was just the stiffness and pain that gave the RA away and following a blood test it was confirmed. He actually mentioned that LORA often appears in PMR sufferers.

[PMRpro Ambassador in reply to tina-shelley]

Hmmm - or is it one of the versions of PMR? Or does LORA often start as a purely polymyalgic presentation?

[tina-shelley in reply to PMRpro]

Well that would be interesting. Unfortunately I don't know enough about the condition but it would be interesting to know how many late onset RA patients also have PMR verses not. My mother did have RA in her hands too. Again late onset and one of the reasons I went to see my GP was because someone was looking at some old photos of her and commented that we had the same hands! Swollen and podgy. I've not been able to wear any rings for ages and the swelling was very obvious but now I'm on the Hydroxychloroquine (3 weeks now) I've noticed a slight reduction in swelling and my hand movement is so much better. Hopefully by 6 weeks I'll see enough of a change to make being on this drug worth while. My poor mother never had any medication except panadol although I know she'd been diagnosed with it.

[PMRpro Ambassador in reply to tina-shelley]

I stopped wearing my rings with PMR - but no sign of anything else

[tina-shelley in reply to PMRpro]

Good! May it remain that way.

[DorsetLady PMRGCAuk volunteer]

Any chance of a transcript of the relevant presentation/Q&As

[Pollyanna16]

I’ll mention in to Dr Hughes.

[DorsetLady PMRGCAuk volunteer in reply to Pollyanna16]

Thank you

[jinasc]

I hope your meeting is full to the brim. Anyone in reach of Truro should drop everything and make their way to the meeting.

I posted this following that meeting. So perhaps a gentle reminder as a trigger and it would be interesting to see if there are any changes or more to add.

Information and Tips for people with PMR and/or GCA from Professor Bhaskar Dasgupta’s talks in Cardiff and Bristol on 24 May 2019

[Pollyanna16 in reply to jinasc]

How do I get into the link?

[jinasc in reply to Pollyanna16]

Pollyanna16, I could not find it but Dorset Lady helped me out.

healthunlocked.com/pmrgcauk...

from-professor-bhaskar-dasgupta

I got this from Wendy 2 years ago- hope your meeting is standing room only. 👍👍

and the people ask the awkward questions. 😈😈

[Pollyanna16 in reply to jinasc]

Thank you I’ll read it before the meeting !

[SheffieldJane]

Sounds fabulous! Please share the gems with us. X

[Poshdog]

Oh well done. Just moved away from Devon, otherwise wild horses.......

[Telian]

Prof D was my Rheumie for 6 years before I moved. He gives good talks- I can listen to him all day. Sharpen your pencil ready for all the information he’ll share with you. Shame you’re too far away from me now. Enjoy!

[NanJean]

Wonderful that using ultra sound to diagnose GCA is being given more attention. My Rheum told me it's what they use in Sweden, which has the largest population of GCA patients. He said that it requires particular skill to read the ultra sound for a bluish halo around the artery. Wish they at least only took the artery on my affected side as the hair line didn't return after the removal on the unaffected side. Here's an article about this:ncbi.nlm.nih.gov/pmc/articl...

[Pollyanna16]

The meeting has been brought forward to 4.15, I believe everyone has been informed 🤞 see you there

[Devoid in reply to Pollyanna16]

Hi we are at the venue, is the meeting downstairs in the function room, no one here seems to know about it?

[Pollyanna16 in reply to Devoid]

Margaret, our organiser says in an email to me Function Room but I understood the doctors were meeting first

[Freya32 in reply to Pollyanna16]

Hallo Pollyanna,Does the Truro group still meet.

If so please could I come sometime.

[Pollyanna16 in reply to Freya32]

My apologies, I just noticed your message Freya. Yes we still meet 2nd Monday in the month at Truro Golf Club 2-4. Next meeting 9/10 you would be must welcome. Make sure you register your car in reception on arrival & the meeting is upstairs on the right. Email me on [e-mail].U.K. If you’d like more detail & I will put you on the mailing list. I will miss that meeting but 🤞 be there 13/11. Best wishes

[Freya32 in reply to Pollyanna16]

Thank you Pollyanna,Is there a lift as I have not been able to do stairs for 9 yrs now?

But I will make a note of the 13/ 11 meeting and see if it is possible for my helper to bring me and someway I could manage the stairs.

She is away abroad on holiday at time of Oct meeting

I will e mail you as suggested .

I had hoped to see Dr Hughes back in November last year but it did not happen.

Thank you again.

[Pollyanna16 in reply to Freya32]

Hi again, Yes the stairs are a nuisance & there’s no lift sadly. Keep in touch anyway. Maybe see you in November x

[Freya32 in reply to Pollyanna16]

Sorry, l seem to have replied to your message in the wrong place.

[Pollyanna16 in reply to Freya32]

Hi Freya, I am now back from holiday & about to send out news to our local members. If you'd like to write to me on the email address I mentioned then I can reply with any news on meetings etc. Best wishes, Anne

[Pollyanna16]

I imagine so but it’s not till 4.15 I haven’t been involved in the organisation of the main meeting. It could be under Dr Hughes’ name or Rheumatology

[Freya32]

Thank you Pollyanna,I will e mail you.