GCA Guidelines January 2020: https://academic.oup... - PMRGCAuk

PMRGCAuk
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GCA Guidelines January 2020: academic.oup.com/rheumatolo...

PMRpro
PMRproModerator

I'm adding this as a new post to make it easier to find. Just click on the blue text to get to the paper with all the details.

About time too: three and half years ago Prof Dasgupta did a presentation in Glasgow saying they would be published "soon".

29 Replies
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Thank you!

DorsetLady
DorsetLadyPMRGCAuk volunteer

My opinion - tapering plan from initial dose (40-60mg) to 20mg still too quick.

For a patient to be down to 20mg in the period of a couple of months is just asking for a flare (GCA may in clinical remission, but not necessarily totally under control).

The guidelines acknowledge flares are likely - so why not consider going more slowly? It’s not rocket science is it, but I guess the same old, same old fear of Pred from the medical profession.

Whinge over! 🤦🏻‍♀️

jinasc
jinasc
in reply to DorsetLady

Never a whinge, we have been arguing about it for years now......................but until there is concrete proof and how we get that I do not know.............

Unless someone does some a survey, amongst patients, collects anecdotal evidence, collated and proved - then we can ask the NHS to do a research project, just like we did with the 'Your Ears'.

Big Pharma won't do it...........no money in it.

nuigini
nuigini
in reply to jinasc

This is needed for both GCA and PMR.

I agree DL. They tried to reduce my dose too quickly and in the end it took a year of yo yo-ing to get me down to 20mg from 40mg.

nuigini
nuigini
in reply to DorsetLady

I agree with you DL. I don't have GCA, but based on all that I've read anecdotally, that taper jumped out to me as wrong.

Why is "current" research always so disappointing, "Sigh"

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to nuigini

Yes it is disappointing - but as jinasc says there’s no money (or maybe the will) available to carry out a study based on current or past patients experiences.

Maybe one day!

If I win the lottery I’ll instigate one 😇

nuigini
nuigini
in reply to DorsetLady

I do the same if I win!

Unless there's money to be had by big pharma, or medical practitioners, there isn't much hope. I was just talking with someone a few days ago and one disease of aging that's getting loads of action in terms of research is Alzheimer's. Why? Because there's loads of opportunity for drugs or various other treatments to prevent and treat this disease, and, it's scaring so many adults regardless of age. Apparently, there's research into treatment involving one or more of the elements of light, sound and vibration in helping to reverse memory loss for example.

GCA and PMR have prednisone and for PMR the rest is all about managing a totally erratic, potentially life long, and unpredictable illness. That's what research falls to take into account and doesn't emphasize enough.

At least that's my take after reading this and other forums for almost 6 years.

Guess that's my rant over.

Staplehurst
Staplehurst
in reply to nuigini

I agree with everything you've said. I also think to a degree we're written off when we get old. Eighty today is no longer considered old. I'll be 73 this year and do not feel old !!

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Staplehurst

Me neither! Hopefully off to New Zealand again this Christmas to visit daughter - with 3 new joints for company!

PMRpro
PMRproModerator
in reply to DorsetLady

That could be a noisy experience with all that metal!!!

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to PMRpro

I know....quite exciting isn’t it!...or maybe not if the security team have their grumpy head on!

PMRpro
PMRproModerator
in reply to DorsetLady

You don't go via the USA do you? Did the chunks of metal come with registration documents like my pacemaker? ;)

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to PMRpro

No, Singapore .....I know it’s some way off, but I’m keeping my eye on you know what!

Apparently there is, or was, a central joint replacement database -must follow it up to see if they issue any relevant paperwork. Think there was a brief discussion some time ago on here, but it was a bit hit and miss!

Nothing new there then.

Good on you and hope you have a great time. Will you travelling a lone?

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Staplehurst

Yes, already done it twice since my hubby died. Unfortunately we never got there whilst he was still alive....he had heart problems ...so he told me to go on my own and enjoy it for him.

Doing as I’m told!

PMRpro
PMRproModerator
in reply to DorsetLady

I could be attending the OMERACT meeting as a patient research partner - a very important place to get through to rheumies as they debate outcome measurements about what is important to patients in the real world of pain and function as opposed to lab results. But there is not enough money to pay flights for 2 patients to attend. Two years ago there was no money for either of us.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to PMRpro

As I said if I will the lottery I’ll fund your trip!

Hope you get there!

tangocharlie
tangocharlie
in reply to PMRpro

Set up a Go fund me or similar - I'll chip in to send real patients to input on something like this.

I know, there was a 'hiccup' a bio-logical one.

I have been tearing my hair out for nearly 2 years now.

They have acknowledged, Lorna PMR Scotland (Lorna), PMR GCA UK, (Dorothy & Kate), and PMR GCAuk North East Support. Those patients put in some hard work.

You helped too, remember. I owe you.....................just don't expect to collect, except for a couple of slices of bacon, no bread of course.

PS: The printer is working overtime.

PMRpro
PMRproModerator

You would think that Dasgupta's work showing it was still active and present after 6 months at over 20mg might have given them a bit of pause for thought,

Thank you for this.

Most interesting in the light of a recent new diagnosis for me. I'll post about it when I've seen my Rheumatologist (SM) for results of a CT angiogram.

Excellent link I can use this for the Helpline thanks.

Thank you - have quickly scanned it and will save it. Interesting again that Lefludomide didn’t feature much in this but then that was always the case.

Have exhausted myself reading the site regarding GCA guidelines ( must admit I did scan some of the bits) and these should be given to ALL GPs. Thanks PMRpro

I hadn't read all these comments on the paper before but can now see some big issues - I missed that about the 40-20mg tapering speed cos I was really focused on my 'relapse' at Table 3. But generally this is not helpful regarding tapering intelligently and just WHY aren't 'they' listening. Is there anybody in the doctors' lot that READS this forum occasionally - because surely this itself is an important source of 'feedback' and if not really 'scientific' and more anecdotal - the volume of similar responses talking about massive problems with tapering is at least 'SOMEFINK' they should take notice of ... surely !!!???

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Rimmy

As we are very often saying, or implying, the specialists may ‘understand’ our illnesses from a medical and biological view, but they don’t understand the reality of living with them on a daily basis.

If we all lived in a perfect world, with no other illnesses, no work, no other family member to care for, no stress, no life to live we might all manage to get through their tapering plans.

But we all know that life ain’t like that!

The medical profession, no matter what ails us, can only concentrate on one thing - and in some ways that’s essential if you’re a surgeon or a heart specialist - but they seem to have no conception that life goes on around us and our families - and WE can’t just ignore that.

They would say it’s not their concern - and fair enough it’s not - but (just as an example) replacing a joint doesn’t just affect that joint, it affects my life - albeit only temporarily. Same with most illnesses.

As already stated the money, nor the will probably, is there to do an in depth survey, and TBH our illnesses are not life threatening (except in very rare cases), are self limiting, and generally affect the older generation!

We just have to all do our bit to try and educate “our” doctor.

Rimmy
Rimmy
in reply to DorsetLady

Thanks DL - well said !! - totally agree with everything - it is just so frustrating that there seems to be resistance to having this more holistic view of humans when they are unwell - I think some education at least in the social 'sciences' should be imperative for all doctors and probably scientists too - but I do think there is some increasing recognition of this as multi-disciplinary education is more on the agenda than it was when I was at university and had to argue then it was much needed !

PMRpro
PMRproModerator
in reply to Rimmy

The patients on the committee did their best. But the docs are only interested in the theory they take away from research. There have never been any decent studies on how to taper - and it wouldn't occur to them to consult with patients.

At the OMERACT meeting in Whistler we had a focus group about using steroids where the guiding medic announced there were no patients to ask. I was present and on the list - but he was perfectly ready to ignore me. Needless to say I didn't let that pass! At the end of the discussion I was talking to a couple of medics who said they agreed with what I said: stop panicking about the pred and listen to your patient. We need what we need - and all you do by forcing us to reduce the dose too fast or too far is create problems. We don't really care about 10 or 15 years time - we have to be able to live now. Otherwise those 10-15 years are potentially going to drive us to drink or suicide. Constant pain is awful - and if pred is the only way to manage it, that's fine by us.

But they are the minority. All we can hope for is to educate our own doctors and spread the word that way. Because no-one will fund a study on using pred better. We are doing it day to day - and if we lsiten to our body, we learn every time we have a problem that we then solve.

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