The GCA-PMR Spectrum - Friday 24th May 10am-5pm

[Dolj]

Anyone following this I haven't been sent the zoom requirements..

[DorsetLady PMRGCAuk volunteer]

Charon sent out the invitation in email yesterday- but it’s slightly different to normal zoom meetings… maybe have a look through your emails including spam…

[Dolj in reply to DorsetLady]

Looking but can't find. Not to worry it will be lunch break soon.

[DorsetLady PMRGCAuk volunteer in reply to Dolj]

Do you have a previous email from Charon you could reply to, and ask her to re-send link….

[Dolj in reply to DorsetLady]

Had email from Fran Benson few days ago

[DorsetLady PMRGCAuk volunteer in reply to Dolj]

Do you reply to that and say you wanted to ‘attend’ online? If so, you should have had a follow up one from Charon….

[Dolj in reply to DorsetLady]

No. No other emails came through. Looked everywhere.

[Rugger in reply to DorsetLady]

Invitation must have been sent out to a selected few, as I didn't receive anything from Charon.

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

There were 2 different invitations sent out - one was for zoom meeting after registering interest… and another one on Wednesday to about a dozen people to attend in person…

[Rugger in reply to DorsetLady]

That explains it! Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

Not much good expecting those in far off places getting to London by 10am… … with only 24hrs notice… certainly not from deepest darkest Dorset. Would take that long on the stagecoach… 🤣😂

[Dolj in reply to DorsetLady]

Oh yes that is a bit much to ask. Perhaps there will be precis to read of the days event.

[DorsetLady PMRGCAuk volunteer in reply to Dolj]

Well I think they are recording it - so hopefully we’ll get that - in bite size pieces….

[Dolj in reply to DorsetLady]

Yes hope it works but is sounding a bit tricky

[PMRpro Ambassador in reply to Rugger]

Had I been in Dorset I'd have managed - but telling me Wednesday I got a personal invite and me in Italy was a bit hopeless!!

They are supposed to be recording it - they are having problems with sound when anyone away from a certain position is speaking. It is pretty technical though.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Might have, if I’d been free!

I’ve been on since just before noon… and it’s a bit hit and miss sound wise . Not sure a recording can be cleaned up… but would like to hear himself’s comments at the beginning..

[PMRpro Ambassador in reply to DorsetLady]

I and a couple of others were getting quite irate on chat!!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

I shall look forward to that then….😏

[Rubha in reply to DorsetLady]

Do you know if this will be available on some catch up format as Im unable to attend today. Thanks.

[DorsetLady PMRGCAuk volunteer in reply to Rubha]

I did ask if it was being recorded.. and Charon who was coordinating things wasn’t sure at the time, and said she would let us know. I didn’t see all of it, but the sound wasn’t brilliant in parts, so a bit difficult to follow. Plus a bit technical for non medics…

[Rubha in reply to DorsetLady]

Thanks DL....I'll keep a look out on HU in case it comes up. Off along the beach now with the dog .

[Dolj]

Ahh great that will be good. Thanks.

[Estellemac]

I think if we could even just get the recordings of the presentations it would be good. Once they sorted the sound it was very interesting. Lots of research and recognition of the inequality at diagnosis and education doing around scans for GPs was good.

[DorsetLady PMRGCAuk volunteer in reply to Estellemac]

There’s an awfully long wish list there, and that’s great… but how much is actually achievable…

The main concern I have is - if imaging is routine for PMR [and I’m not saying it isn’t important] then the system becomes overwhelmed and it’s even more difficult for GCA patients to be tested.

I realise I may be accused of being biased towards GCA patients, but that scenario could be catastrophic for many more.

[Nightingales in reply to DorsetLady]

I couldnt attend the zoom so don’t know what was discussed but if it raises the awareness to consider PMR on imaging that would be good. I would venture I am not the only one who had referrals to different consultants who didn’t think of PMR. A hip dr. did an ultrasound and MRI. Guess what, report said large amount of inflammation. Had bursa injections. Six months later shoulder X-ray and US showed large amounts of inflammation. I had surgery for that! Eventually, a new GP saw very high ESR and CRP and put two and two together.

[DorsetLady PMRGCAuk volunteer in reply to Nightingales]

I’m not saying it shouldn’t be done… if fact all in favour of it… but my concern is, is it affordable, achievable etc.. and will the added burden of trying to process both potential/probable PMR and/or GCA patients add to much longer waiting time inevitably resulting in potentially more losing their sight.

[Nightingales in reply to DorsetLady]

Oh Yes. I was just saying when they serendipitously find lots of inflammation they might consider PMR if the word spreads.

[PMRpro Ambassador in reply to DorsetLady]

That was what the GP was saying in the later stages - it isn't going to happen in the NHS as it is at the moment. Even Christian was pessimistic about getting a PET scan for many patients here, I had to wait a couple of months I think. And I don't think the ideal fast-track for PMR was anything more than wishful thinking. But what MUST be done with the imaging is show that PMR is NOT the benign and self-limiting disorder that far too many rheumatologists have made it into. Partly of course because the imaging wasn't available to contradict the superficial view.

But I think the far more relevant point is the proportion of patients with "only" PMR who aren't "only" PMR but have at least LVV and there were some with cranial GCA. Just because the patient presents with PMR symptoms and apparently nothing else it doesn't mean they aren't at risk of stroke/MI or even sight loss.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Totally agree there needs to be a change in mindset on the “it’s just PMR” approach…and I’m not saying imaging shouldn’t be used more widely for PMR.

I just fear at present an overloaded system will serve no one any favours… as we know the longer it takes to diagnose, the more serious the outcome.

s

[ChinaWuntoo]

Bit late now but ...

I would have loved to attend and could have done so had I not been carer for my wife. (Not saying I would have understood much of it!)

It took me almost 30 mins to get logged on as I thought it was a zoom presentation: I emailed Charon who put me right but I didn't have Teams and had to install it and try to learn how it works. I did get to hear Dr Dasgupta which was my main interest from the agenda but I could not understand anyone else. So I gave up after his presentation.

I, too, would value some sort of report.

I agree that some of it felt like cloud cuckoo land with the present state of the NHS, but that's how innovation starts I guess.