Research data that may be of interest - Comorbidi... - PMRGCAuk

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Research data that may be of interest - Comorbidity data PMR and GCA

Phoenix51 profile image
19 Replies

I am not a scientist or a data analyst so cannot comment on the validity of this research .. others with more knowledge, insight and experience would be in a better position to do so, however I’m posting as ilthe results would seem to be significant although probably not surprising to many of you on here.

Dr David Liew:

“You might think that steroid exposure in PMR patients wouldn't lead to new comorbidities.

These data beg to differ. New steroid-related comorbidities ++ across domains vs matched controls in real-world US claims data”

twitter.com/drdavidliew/sta...

And GCA...( although labelled as PMR for some reason)

twitter.com/drdavidliew/sta...

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Phoenix51 profile image
Phoenix51
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PMRpro profile image
PMRproAmbassador

If you look at the other slides (click on the arrow to the right) and look at the study limitations, I think there is a big questionmark relative to this comment:

"Due to the retrospective nature of this analysis, we cannot confirm that glucocorticoid use is specific to PMR."

Looking at the results page you can see the mean daily dose is more than 16mg/day. That is the sort of starting dose that most PMR patients will be given. The aim then should be to titrate the dose by a slow taper to find the lowest dose that achieves the same result as the starting dose did. The average expectation is to get to 5mg in about 18 months for PMR and most patients get to well below 15mg before getting stuck.

That is not a PMR level of pred, that is the sort of dose you would find in GCA patients and it has never been disputed anywhere I have seen that there aren't considerable comorbidities in steroid use in GCA. I have been on pred for 11 years now for symptoms that fit PMR - with the odd suggestion there might at times have been a bit more in the line of LVV (large vessel vasculitis, the bit between PMR and GCA) - and never above 15mg except for a period when I was switched to Medrol which simply didn't work for me. After a couple of months at 20mg I switched to a form of prednisone and overnight got a better effect with 15mg and within a couple of months was down to closer to 10mg.

A similarly based study done by the Mayo at Rochester found the opposite - that there was no significant increase in steroid-related adverse effects in PMR patients compared with an age-matched population who didn't have PMR. They found the mean INITIAL dosage was 16.9mg/day - supporting my query about his MEAN dosage.

It also must be asked whether some of the comorbidities were due to the vasculitis underlying both PMR and GCA itself. Hypertension and renal problems certainly both could be, I have a cardiac condition that is asserted to be due to the damage done by the underlying autoimmune disorder and I doubt I am alone. Weight gain is also a risk factor for several of the comorbidities.

And the comment by Ben Dean is also pertinent:

"Doesn't this assume that all PMR is the same and will respond the same to treeatment? And that PMR is not heterogenous and these results may partly relate to differences in patient phenotype?"

You don't HAVE to develop diabetes or gain weight. They both feed other comorbidities, especially diabetes but it is unlikely either will be avoided just by taking the tablets. You have to work on it. And the management has to aim for the lowest dose you can get to, not just hand the patient 15-20mg and leave them on it for ages, which I have come across in the USA. No wonder they are scared of leaving patients on pred - they aren't using it optimally.

There IS a need for an effective and safe steroid sparer for use in PMR - but this poster exaggerates by being unclear which data come from which disorder. This must be mixing GCA and PMR - and there is now a steroid-sparer for GCA. The best steroid-sparer is optimal management of dose - that needs looking at.

PS - the 2 posts are identical - suggesting a careless poster?

Phoenix51 profile image
Phoenix51 in reply to PMRpro

Apologies if I have carelessly posted ., I had believed that I had posted one tweet that included data about PMR and the other one that showed data for GCA ( the dr makes reference to this still being listed as PMR) the results of the GCA findings are slightly different to the PMR results

PMRpro profile image
PMRproAmbassador in reply to Phoenix51

I didn't mean you - him!!!!! In that case - have you the link for the GCA different results?

Phoenix51 profile image
Phoenix51 in reply to PMRpro

twitter.com/drdavidliew/sta...

You could try this I have lifted directly from the tweet - tried to send a photo but it wouldn’t allow me to post it. there’s some Keele Uni research attached in the same thread by the same poster

twitter.com/drdavidliew/sta...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Phoenix51

No, you’ve posted two different tweets - the references are different, as is the first reply.

Phoenix51 profile image
Phoenix51 in reply to DorsetLady

and this response to the research retweeted by Dr Sarah Mackie twitter.com/stamatis_pavlos...

Poster suggests a subgroup of PMR patients that go on to develop GCA

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

The graphics are different, GCA is worse. But I don't have the mean daily dose of pred which interests me.

But these comments are interesting:

"Even more tricky when we consider the rates of morbidity pre-PMR and how these might contribute. e.g. T2DM lower, but CVD higher in people later developing PMR

More work to do here." Sara Muller

"Very interesting study elucidating the connexion between subclinical inflammation prior diagnosis, inflammation after the diagnosis and comorbidities. It would be interesting to see the comorbidities of the subgroup of PMR-patients developing GCA." Pavlos Stamatis

You can't take PMR and GCA journeys in isolation - several of us can identify things that are happening alongside the PMR/GCA that our rheumies just shrug and say "I don't know" and some of them were there before the final crunch of PMR or GCA symptoms flooring us. You and I know how long we were "doctoring" and told there was nothing wrong.

They must look at PMR as a set of types - I've been saying it for years, Sarah Mackie is coming round to the idea. PMR patients who need lots of pred, whether higher doses or for longer, have something else going on and must be thought of differently too.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Well I did have treatment for HBP for about 13 years before GCA started.....any connection? Who knows.

SnazzyD profile image
SnazzyD in reply to Phoenix51

Doesn’t matter anyway, because it gets a discussion going and people can learn about appraising research.

Phoenix51 profile image
Phoenix51

And this response to the research retweeted by Dr Sarah Mackie twitter.com/stamatis_pavlos...

Poster suggesting subgroup of PMR patients who go on to develop GCA

PMRpro profile image
PMRproAmbassador in reply to Phoenix51

Yes, that's the second quote I posted. Relevant to DL's comment: if I remember rightly she had PMR-type symptoms well before the GCA arrived and says she also had hypertension. So often GPs just treat the BP, if it goes down they are happy. But almost never look for an underlying cause.

Amkoffee profile image
Amkoffee

I am neither a doctor nor scientist nor statistician. But I have to wonder if he looked at the same age group in the general population and the population with PMR. Because we all know that generally speaking PMR effects people over 50 (there are exceptions.) and I know that a lot of these diseases also affect people over 50 at a higher percentage of time. I would also like to know the size of a study because this can have a significant impact on the numbers.

PMRpro profile image
PMRproAmbassador in reply to Amkoffee

Very fair comment - because I know the work from the Mayo at Rochester very deliberately states that the populations were age matched. That means not only looking at "over55s" - but every 55 year old with PMR was matched with a 55 year old without PMR, and every 80 year old with another 80 year old.

jinasc profile image
jinasc in reply to PMRpro

Now I came to this late and you have set me wondering. I had no illness, no pain and nothing at all untoward and then GCA came out of the blue. OK my Mam had both PMR & GCA................so I sort of put it down to genetics..................but?????????

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to jinasc

So knows?....zilch in my family ...

apart from arthritis on the female line....along with stubbornness and a tendency to be vocal! 🤦🏻‍♀️

jinasc profile image
jinasc in reply to DorsetLady

the ' a to ! ' as you well know applies to moi 🤦‍♀️🤦‍♀️

I only ever met one other person who had no PMR just GCA and she took part in the TCZ trial and it worked for that lady.

PMRpro profile image
PMRproAmbassador in reply to jinasc

Then there is your apprentice ;)

tangocharlie profile image
tangocharlie in reply to DorsetLady

'stubbornness and a tendency to be vocal!' That would describe me too! Probably crucial traits for surviving PMR

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to tangocharlie

Crucial traits for surviving lots of things methinks!

Well that’s my excuse anyway 🤦🏻‍♀️

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