Dr Sarah Mackie and The Target Consortium paper:

[Rimmy]

I read some interesting info (of which only a small extract is copied by me here) on a recent tweet from Dr Sarah Mackie - which I was not able to copy or upload a link to share - but for those who also follow her on Twitter no doubt they can find the full doc in her feed.

[it was prefaced by these comments:

'Come and talk to us about TARGET: our MRC-funded partnership between clinicians, scientists, industry to improve outcomes for patients with giant cell arteritis #GCA']

She is writing about a TARGET CONSORTIUM forum for clinicians, scientists, industry and patients to collaborate in research that improves outcomes for patients with giant cell arteritis, and reduces the burden of steroid toxicity'.

To do this she states they will use 'data analytics' - 'The Leeds Bioinformatic Centre will provide access to omic and e-health data' ... 'with clinical data from patients with GCA from 49 centres across England'

this document among other things states that:

'GCA 'is the most common form of systemic vasculitis'

'up to 75,000 people in the UE and US are identified with it each year'

'it is hard to diagnose because different patients experience varied and sometimes ambiguous symptoms'

'clinicians struggle to manage the balance between the long term cumulative toxicity of corticosteroid therapy, against the fact that steroids suppress inflammation and can enable patients to continue their everyday functions'

'not all patients respond to steroid therapy in the same way, some respond well and recover quickly, but others endure high doses of steroids for a number of years'

'the first biologic therapy has recently been licensed in the UK and EU so there is an even more pressing need for rapid, accurate diagnostics and patient stratification tools as well as better use of clinical data'

etc etc

[DorsetLady PMRGCAuk volunteer]

Interesting, thank Rimmy

Another comment under Toxicity -

‘Although Pred is inexpensive, the healthcare costs of long-term steroid use are immense’

I know Dr Mackie is one of the good guys, but if this is the message being given out by her and the team, no wonder other less knowledgeable doctors have fear of Pred.

Or maybe she’s just over emphasising the negatives of Pred to promote a new approach!

[Rimmy in reply to DorsetLady]

Yes agree DL - I know she is very well-regarded although I was a bit 'worried' as well about the emphasis on the 'toxicity' of Pred but I presumed this was all about looking for something 'better'...

[Rimmy in reply to DorsetLady]

Oh DL I also thought the 75,000 per year figure interesting - it highlights that GCA is NOT so 'rare' that doctors should have (in many cases) such limited knowledge about it and how to treat etc .... !!?!

[PMRpro Ambassador in reply to Rimmy]

It's about 12,000 cases a year in the UK I think. There are an awful lot of people in the US!!!

This data-driven study done in the UK

ncbi.nlm.nih.gov/pubmed/251...

says "GCA is relatively uncommon; its incidence peaks at age 70-79 years in women. Overall, GCA patients in the UK are treated with high cumulative prednisolone doses. Many conditions are associated with GCA, including several related to corticosteroid use."

You'll note too that its "incidence peaks between 70-79 years" - and actually high dose GCA doses do cause a lot of trouble for elderly patients.

I suspect the perceptions of years are often reinforced by the patients who do suffer.

[Rimmy in reply to PMRpro]

Thanks PMRpro - I suppose stats can be misleading but I struggle to understand the rather too common lack of knowledge many medicos see to have about both PMR and GCA . Mind you I haven't had enough 'diseases/conditions' (as yet) myself to really have a strong impression about how 'good' they are on a range of other matters - but (hopefully) still plenty of time to make such comparisons. I also find it interesting that some people clearly have more problems with both short and/or longer term use of corticosteroids - although I am aware that 'cumulative dose' is a 'thing' of some general concern ... time for me there with that as well ...

[Rimmy in reply to PMRpro]

'seem' to have...

[PMRpro Ambassador in reply to Rimmy]

For GCA in particular they don't face it day to day - a couple of times in a career maybe. PMR there is less excuse as it is the most common cause of rheumatic complaint in over 65s! But they have been taught that once the patient is on pred they are absolutely back to normal and it only lasts a couple of years.

Our current task is to teach doctors that is not so. I was part of a group on corticosteroids at a meeting a couple of years ago - and at another group as the patient rep on PMR. The bull^&*£ I heard from a couple of rheumies accounts for how we are managed - "Here, take this and go away..." I think they left educated. And a couple of doctors came up to me saying what I had been saying was quite a revelation.

[Patience47 in reply to PMRpro]

Thank you, PMRpro

[Lochy in reply to PMRpro]

Interesting but depressing. I feel as if I’m always battling even though my GP is supportive. I genuinely believe he doesn’t know how best to advise me and sees my Rheumy appointments don’t help much either. I rely on the info I read here and online. But even then how best to use it at appointments. I

I’m 58, two years almost exactly since started Pred. Not behaving as all the ‘normal’ PMR patients in his practice! How do you push for explorations investigations into anything else it might be when they put you in the PMR box and shut the lid!!

[Rimmy in reply to Lochy]

Hi Lochy

It's sure not a good feeling when you aren't getting the support or advice you think you should be. Also the challenges involved for many of us having to 'educate' medicos should not be underestimated because as you suggest it can also be additionally stressful (just what we don't need) trying to figure out how 'best' to do that. If you have a relaxed and amiable GP as I fortunately do - I can raise and show him things derived from my research and the forum and he is fine with that - but on the other hand I sometimes feel I am lacking some of the insights a practitioner or specialist 'should' really be able to offer people with PMR/GCA. Conversely (are things ever 'simple') - if they are dictatorial or too authoritative - whether they are well-informed or not (from our perspectives at least) then that can also feel uncomfortable or even all 'wrong'. Striking a balance can obviously be hard for everyone - but we should be able to have reasonable expectations.

I think though if you have any serious doubts about your diagnosis or treatment you SHOULD push for other investigative possibilities. Try to be firm and determined - after all you are paying for a service which SHOULD be up to scratch - this is your health and your life - so never be a 'shrinking violet' - stay strong or worst case scenario try another doctor ! ?

[Lochy in reply to Rimmy]

Hi Rimmy, thanks for your reply. I am becoming increasingly assertive and like yours my GP is understanding and now sees that I know best how I feel and what dose I need to be on so that does help. It’s when your discussing your current ‘state’ I find it hard as so many things are going on sometimes you’re unsure what to mention or not and I don’t find they lead the discussion.

[PMRpro Ambassador in reply to Lochy]

You hand them this link:

medpagetoday.com/rheumatolo...

and explain it confirms earlier work by the Italian King of PMR work, Salvarini), that suggested PMR lasts and pred is needed for up to 6 years in many patients. The concept of a 2-year duration of PMR is thoroughly discredited.

And then you hand them this link:

academic.oup.com/rheumatolo...

and ask is it is possible you may be somewhere else on the spectrum - but perhaps only exhibiting PMR symptoms (as I did).

PMR is not just arms and legs and GCA is not just head. But the joiny-uppy bit is consistently ignored.

And really - while I would love to be "normal" that is a word that shouldn't even cross a doctor's lips in relation to a patient presentation!

[Lochy in reply to PMRpro]

Thanks for the links. I have seen these articles I think after you have posted links. I’ve saved them and may take them with me next time.

I do wonder if I have some LV symptoms especially as I feel like the vessels in my arms are aching - as if something is running through them. What is a description of arm claudication? Never quite understand the term. I do occasionally feel my scalp to be sensitive but not tender. Comes and goes - as most things do!

To be fair my GP never uses the term ‘normal’ either but does acknowledge his experience of PMR is more typical of mid 70/80 year olds who successfully reduce their steroids.

I’ve decided to describe myself as ‘special’ 😁 Mind you that’s not something you really want to be in the medical world! Fortunately I’ve not lost my sense of humour yet and appreciate I’m a lot better off then many.

[PMRpro Ambassador in reply to Lochy]

Arm claudication may be seen as aching biceps or triceps after using your arms either to do repeated actions or a sustained one: for example mine was obvious when ironing or cleaning windows (repeated action) or if holding a phone to my ear. My scalp sensations lasted a few weeks - and disappeared. The jaw claudication lasted longer but went entirely after being put on pred - it may have gone sooner, I can't remember.

[Lochy in reply to PMRpro]

Well that definitely describes my arm pain but it’s usually only one arm, can’t remember if it has ever been both. Never had jaw or tongue pain. I have mentioned my arm to the GP but nothing has ever been said about it.

Would I be right in assuming if I’m feeling it I’m not on enough Pred or might it just be a blip.

[PMRpro Ambassador in reply to Lochy]

Get your GP to check the BP in both arms - to see if they are the same. If the BP is noticeably lower in the arm that develops the claudication pain that may need to checked out.

[Lochy in reply to PMRpro]

Thanks will do.

[Hidden]

Didn't see a mention of pain management or life quality in there Rimmy. I suppose that can not be stat.measured in the same way! Surely it's the patient experience which should be what it is all about not prescribing to a plan that fits mathematical prediction! Hope most of us soon might be able to make their own decisions about dosage etc. Without them fearing long term consequences for us! Perhaps a signed disclaimer may be on the way! Certainly signed a few of those in my hospital stays! Didn't seem to hurt.....

[Rimmy in reply to Hidden]

Couldn't agree more Pepperdoggie - I'm always on about 'good' medical treatment being an intersection of individual/social/scientific matters - rather than merely any 'quantitative' exercise - nothing else makes any sense really. I am fortunate I have a doctor who 'permits' me to manage my own dosage (so far anyway) but I do wonder if and when I start exhibiting any 'serious' side effects if he will change his mind - we'll see. My partner and I have also discussed the idea of signing a 'disclaimer' re Pred . But what a complicated area this really is - all that legalese mixed up with 'responsibility' for who should know/do what, kinds of treatment and individual patient circumstances etc - stuff of nightmares ... people being 'sued' ... but as you say this combination already exists with regard to many medical procedures ... surely more education and research would be 'better'.

[SheffieldJane]

Thanks Rimmy! She’s my doctor luckily. I follow her on Twitter too. I skim read and moved on. You’ve got a clearer head than me today. Could not précis the attachment, brain fog.