Light on the horizon?

[Kendrew]

On Thursday I attended my PMR/GCA Support Group meeting in Southend. Prof Dasgupta came to speak to us and I thought some of you might be interested to hear what he had to say.

It was a talk that certainly gave hope for a change in attitudes and therefore a change in treatment pathways.

He firstly commented on research and studies that had now led to a directive for PMR and GCA to be classified under the same umbrella and be recognised as both part of the same disease. This was justified as necessary because of the large number of connected phenotypes involved.

So instead of PMR & GCA often being considered & treated as separate issues these two 'sets of symptoms' will be known as 'GPSD' or.... 'GCA-PMR Spectrum Disease'.

Manifestations of any of the relevant symptoms will now consider & take into account the connection between both PMR and GCA and treated accordingly.

For a long time, many of the more 'clued up' medical professionals have recognised this 'obvious' link, but without evidence, a formal directive or new set of guidance it's not been possible to filter this down to those who need to know. New thinking and new protocols are not always easy to put in place, particularly when 'change' isn't always readily accepted but it seems this new strategy will indeed happen now.

He also said that as a result of the studies and research that's been undertaken over recent years, and with this new thinking in mind, for some people, being prescribed steroids will not necessarily be the first or only treatment option available. Some of the current supplementary drugs together with a new and very promising drug that he mentioned (and I'm sorry but I can't remember it's name) will be able to be used to manage certain combinations of symptoms instead of steroids..... as long as NICE approve the new drug!

This opens up another pathway (for some patients) for a treatment pathway that's safer than steroids, therefore minimising the risk of some of those nasty side effects that frequently seem to pose so many additional health issues.

This is literally a very condensed version of his talk and I'm afraid I'm not medically knowledgeable enough to understand or explain the science behind it all. Unfortunately it won't really benefit most of us but it gives hope of a better way forward from initial diagnosis, for patients in the future.

[Koalajane]

thank you for posting this, it is very useful. It is good to see that research is moving things on.

It would be good to see a transcript of his talk.

Thanks again Kendrew

[Kendrew in reply to Koalajane]

I'm not sure there's anything available. He tends to not prepare anything when he comes to talk to us....it's just 'off the cuff'. It wasn't recorded either.

I'll see what I can do.

[Rachmaninov2]

Very interesting. Thank you for the information Kendrew.

[PMRpro Ambassador]

Kevzara/sarilumab - an IL-6 inhibitor like Actemra/tocilizumab so equally expensive. It is already FSA approved in the USA> He's just had his name on a paper published about a study using it in PMR.

Biologics have adverse effects too - ask SheffieldJane - and NICE's objection to Actemra being used longer for GCA was lack of long term safety data, That isn't available for Kevzara either as far as I know and I don't get the claim for Actemra anyway as it has been used for years already in RA.

The redefinition as GPSD might mean us longtimers may get a bit more offered to us but I wouldn't hold my breath in the UK ... I think he may have had his pink specs on and telling you what he thought you'd like to hear. He has form on that.

[Kendrew in reply to PMRpro]

Haha! Thanks Pro. Yes, I'm afraid my own personal experience means I can't disagree with you!

[Longtimer in reply to PMRpro]

Couldn’t agree more! Just what I was thinking when reading it.

[cranberryt in reply to PMRpro]

And unless they take away that bit about it being impossible to have this condition under the age of 50, getting a dx and treatment may still be difficult for some! I am glad there is work being done though to improve things for those afflicted in the future.

[PMRpro Ambassador in reply to cranberryt]

It already says "rare under 50" in many places and there are proven cases of GCA in under 50s. If you can have GCA - you can have PMR and this may make that thought occur to them.

[Kendrew in reply to PMRpro]

One of the people at our PMR support group meeting actually asked the Prof if you could get it under 50 and he said no, not really!! 🙄

[PMRpro Ambassador in reply to Kendrew]

Bet that is because Sarah says you can ...

[Longtimer in reply to PMRpro]

“Not really?? “ why couldn’t he say yes or no!…

[PMRpro Ambassador in reply to Longtimer]

Because he knows darn well it happens but it isn't in the literature ...

[Longtimer in reply to PMRpro]

Oh silly me…..

[Charlie1boy]

Thanks for posting. Very interesting.

[Dochaz]

Interesting to read. I hope this work will reach beyond the English speaking world. I've never been offered anything other than Pred, and to be honest, that's ok for me as I've had very limited side effects and I'd be wary of adding anything else to upset the balance.

As for the new name... here in France they still talk about Horton's disease which is quicker to say than "artérite à cellules géantes"! I really don't know how GPSD will translate 🤔

[Sharitone in reply to Dochaz]

MSAPH - Maladie du Spectre de l'Artérite-Polyarthrite de Horton?😆Sorry, just had to have a go at that one.

[Kendrew in reply to Sharitone]

Show off!! Haha! 😄

[Sharitone in reply to Kendrew]

😂I spent ages on Wikipedia!

[Kendrew in reply to Sharitone]

😂😂😂

[DorsetLady PMRGCAuk volunteer]

Thanks for this - we shall see what unfolds.. 😊

Did find this small article on subject -

pubmed.ncbi.nlm.nih.gov/373...

[123-go]

It may be a condensed version but contains far more than I remember (except for the name of the drug which I did recall and which PMRpro has commented on). Well done 👏👏👏.

I enjoyed the talk and was pleased that it was so well attended. Prof was very approachable, wasn’t he?

Thanks to the volunteers for organising the meeting. 💐

[Kendrew in reply to 123-go]

Yes....he was on good form and very relaxed.

[kim4666]

Hi Kendrew

Thanks for this , sounds very promising.

Kim

[SheffieldJane]

Thanks for sharing. We are on the map - most def.!

[Heron82]

Thank you for the very good summary. Hopefully the terms atypical PMR etc will no longer be used for this spectrum disease.

Be great if the same talk could be given by zoom to members of the charity.

Thank you for the link to the article DL.

[PMRpro Ambassador in reply to Heron82]

"Hopefully the terms atypical PMR etc will no longer be used for this spectrum disease"

You can say that again!!!

[DorsetLady PMRGCAuk volunteer in reply to Heron82]

Ditto to "atypical GCA" comments as well..

[Krawlins]

Hi Kendrew

I live in Rochford possibly near you. I have no diagnosis for my symptoms but feel I’ve got something that hasn’t been labelled yet (other than osteoarthritis in all joints and CRPS) and i wondered if Prof Dasgupta still worked privately at The Wellesley. Would you happen to know this? I believe I may have a CTD or even Dercums was mentioned by a dermatologist in a letter to my doctor but this was never followed up.

Many thanks

[Kendrew in reply to Krawlins]

Yes he does. He's retired from his NHS practice but still runs his private practice.

[Krawlins in reply to Kendrew]

Thank you, I believe I still have a contact number for his secretary so should be able to track him down no problem

Regards, Kay

[Kendrew in reply to Krawlins]

I may still have his secretary's number if you need it. I saw him privately for a while too.

[Pixix]

Very interesting. Even if timing means it won’t be in our time, but the side effects I’ve heard of for other drugs are worse than pred, it seems! But so good to hear work is being done to improve things! Thanks for posting! S x

[PMRpro Ambassador in reply to Pixix]

I think you have to qualify that - POTENTIAL side effects but they tend to be rare rather than widespread.

[Pixix in reply to PMRpro]

Yes, absolutely, my fault. I think it’s easy to judge things by one’s own health…I’m a person who gets every side effect of nearly every drug I try! I think some people don’t get any,b& most get some, perhaps?

[PMRpro Ambassador in reply to Pixix]

I doubt anyone gets absolutely NONE, though given what you can experience just with PMR itself, it is difficult to be sure. My MIL was like you - even without fibro! Give her a new pill and she'd demonstrate every rare side effect within days and she had never read a PIL! She could have saved the pharmaceutical industry millions - new career for you maybe?

[Pixix in reply to PMRpro]

Yeah, reckon you’re right!! My new vocation! I guess nobody gets none with a drug like pred, for sure. I don’t read the PIL…I just wait a week & see if all the side effects I think i have are actually due to the drug! S x

[Scarysit]

Thankyou Kendrew

Good to know things are moving on