A Good and Interesting Week

[Bcol]

Hi all

Firstly, I have finally had the last of the present series of inoculations, so, RSV, Covid and Flu all went well with no obvious side effects or worries.

Secondly, I have an interview on the 19th for this Study from the Norwich Medical School,

Faculty of Medicine &Health Sciences , University of East Anglia.

"Study title: Patient and clinician perspectives on definitions and determinants of relapse and remission in polymyalgia rheumatica

I am a researcher working at the University of East Anglia and I am interested in exploring your experiences of living with a diagnosis of polymyalgia rheumatica (PMR). The purpose of this study is to (a) explore patients ‘lived experience’ of relapse and remission associated with PMR and (b) the clinicians’ perspective about which components are important to define relapse and remission.

I would like to invite you to be involved in this study as your contributions will then inform the development of remission and relapse criteria in PMR that can be used routinely in clinical practice.

This study has important implications for clinical decision-making, treatment management, and evaluation of treatment outcomes which are important and relevant to patients with PMR and the clinicians that treat them.

Many thanks for your help

Dr Max Yates

Clinical Associate Professor"

Hopefully I can contribute to something which may help in the future with PMR and its management.

I think this invite came through the forum and the helpline is clearly mentioned at the end of the Participant Information Sheet.

[DorsetLady PMRGCAuk volunteer]

Sounds good - on both fronts. a you know M.Y. is one of the good guys, so hope study is as well.

[PMRpro Ambassador]

I would take a trip over to participate in that!!!! He really is a nice guy.

[Longtimer in reply to PMRpro]

I myself have not contributed because now having a diagnosis of Fibro, with PMR gone did n't think it would now apply to me....hate not to do these things, especially it being MY doing it, what do you think please?.....

[PMRpro Ambassador in reply to Longtimer]

Why not - you have had PMR in the past, And actually - you probably have still got it if the truth were known'admitted. His colleague has commented on how GCA relapses in different ways and I suspect PMR does too - they are related when all is said and done. So in a lot of ways - I think your experience is relevant. There are quite a few who still have problems post-PMR and all too often that is ignored.

[Longtimer in reply to PMRpro]

Ok, will now try and find where it is requested......thank you

[Bcol in reply to Longtimer]

Completely agree with PMRpro. No reason at all why you shouldnt ask to be considered. Your previous experience of PMR and how you managed it is as relevant as anyone else's. Although I've been off Pred for a couple months now I'm perfectly happy to accept that it could be/is still lurking and could return in all it's "glory" at any time.

[Longtimer in reply to Bcol]

Thank you,trying to find original request....

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

My GCA had been in remission a couple of years, maybe longer, before I completed the OMERACT study. I did querying whether my experience would be of any use as it not current… and was told it would. So completedit.

All experience of living with or through our illnesses are relevant.

[Longtimer in reply to DorsetLady]

That's good, thank you.....