Award for research that confirms something we've ... - PMRGCAuk

PMRGCAuk

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Award for research that confirms something we've said for a long time - when GCA relapses, it can look very different from when it started!

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14 Replies

nnuh.nhs.uk/news/chetan-muk...

You may be surprised at this, especially if you have been a patient of his. This is something we as patients have suspected for a long time so it is only fair to acknowledge his work confirming it!!!

The presentation of GCA can change over time - and if he bothered to listen more closely to his patients, he'd know that PMR does too. Just because a patient doesn't fit the image they have doesn't mean it isn't GCA or PMR that is resurfacing as he makes them taper to order. I can only hope that patients get a better deal.

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14 Replies
tangocharlie profile image
tangocharlie

I'm glad that doctors are finally starting to actually listen to us and learn from patients. This was the 'expert in GCA' rheumatologist who did a talk a few years ago at the PMRGCAuk AGM pre Zoom days and was absolutely adamant that GCA went away in 100 weeks, to guffaws of disbelief and incredulity from the audience many of whom presumably had had it for longer. I'm sure he has learned a lot since then.

Longtimer profile image
Longtimer in reply totangocharlie

Yes, he has no time for PMR patients……glad he can help GCA patients though, finally.

Nextoneplease profile image
Nextoneplease in reply toLongtimer

That sounds heartfelt, Longtimer 🥺

Hoofprints profile image
Hoofprints

Is it ok to DM you?

PMRpro profile image
PMRproAmbassador in reply toHoofprints

Of course.

Hoofprints profile image
Hoofprints in reply toPMRpro

👍🏻

Lafontainepam1 profile image
Lafontainepam1

I have tried the tapering, up and down, finally a few years ago I quit trying! I’ve been on Prednisone for maybe 15 years, now at 75 , I am on 5 milligrams and that’s where I’m staying! Thankfully Prednisone hasn’t affected my bones to get any worse than they have been. My Dr. is fine with me staying on 5 milligrams indefinitely!

PMRpro profile image
PMRproAmbassador in reply toLafontainepam1

If I could get to 5mg, that's where I'd stay too! Currently 7mg but with Actemra - the thought of losing that is not encouraging me to return to the UK!!

Nextoneplease profile image
Nextoneplease in reply toPMRpro

Why is 5mg seemingly regarded as such a benchmark? It’s not so far from 7mg…..Is there a specific reason why 5mg is better thought of than 7mg, if you see what I mean?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Also mentioned in latest Vasculitis newsletter -

vasculitis.org.uk/wp-conten...

As you say, he needs to think about PMR as well.

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

And his manner ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

Very true!

cycli profile image
cycli

I'm sorry to say this but if you look at the facial expression it tells a lot about the character of the person. More concern about self than others. In consultancy I learnt from day 1 that all the answers to improved productivity resided in the existing staff if you knew what questions to ask and listened to their experience. The same applies to medics. You may have expert skills and knowledge but listening and observation get to the root quicker

123-go profile image
123-go

It’s both satisfying and frustrating to read this for obvious reasons.

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