NICE recommendations for polymyalgia rheumatica

[PMRpro]

We thought that this might be useful to people whose doctors claim they are "too young" to be given a PMR diagnosis:

cks.nice.org.uk/polymyalgia...

which says

"Polymyalgia rheumatica

Last revised in January 2019 Next planned review by December 2023

Scenario: Management of polymyalgia rheumatica

From age 40 years onwards."

There is a lot more on the link but anyone in the UK can access it for themselves. I won't quote it here as some is, shall we say, not entirely helpful, being more in line with theory than practice! Maybe by 2023 we'll have got through to them that 1-2 years duration is a decided underestimation!

Later in the article they say:

"Provide written information on PMR and regional patient support groups.

Polymyalgia Rheumatica and Giant Cell Arteritis (PMRGCA) UK (pmrgcauk.com) provide information packs, a helpline, newsletters, support groups, and a web forum for people with PMR and GCA."

and

"Arrange routine reviews one week after any change in dose and at least every 3 months in the first year following diagnosis.

Advise the person to arrange a review at other times:

Urgently, if they develop symptoms of GCA.

Routinely, if they develop symptoms of relapsing PMR, including proximal pain, fatigue, and morning stiffness."

These are all things your GP needs to be aware of - and, it appears, some rheumatologists who haven't read it either!

NICE: National Institute for Health and Clinical Excellence

[DorsetLady PMRGCAuk volunteer]

Good - some progress then! Bit more required.

Are you going to pin?

[PMRpro Ambassador in reply to DorsetLady]

Now done - I'd done it as much to know where to find it if I needed it. It's thanks to Poopadoop - she found it!

[HeronNS]

Only visible in the UK.

[Hidden in reply to HeronNS]

I have posted a lot of the content on another thread. Will edit it in... You should find on this thread.. .

healthunlocked.com/pmrgcauk...

[Joydeck in reply to Hidden]

For the hell of it, I Googled a line of your posted content.

Yes, here in Australia, I can read the entire the Polymyalgia Rheumatica, 01 January 2019, NICE abstract but without formatting!

[PMRpro Ambassador in reply to HeronNS]

Yes, I can't see it either! I didn't want to put the whole thing here as it is quite long and people wouldn't bother with the original post if it were.

[Hidden in reply to PMRpro]

It is interesting to see what research they have used. I think putting it up for age change is the most important. Even if NICE don't always get it right, jinasc waS saying previously that the patient reps fought for the 40 onwards and like the post says... Its there for people whose Dr's say they are too young. I wonder why it's not available outside UK. Its used international research so its not a big secret!!

[HeronNS in reply to Hidden]

This is what the page says:

CKS is only available in the UK

The NICE Clinical Knowledge Summaries (CKS) site is only available to users in the UK, Crown Dependencies and British Overseas Territories.

CKS content is produced by Clarity Informatics Limited. It is available to users outside the UK via subscription from the Prodigy website.

[HeronNS in reply to HeronNS]

So I've run into this before, that NICE is not available outside the UK and territories. Probably something to do with it being government guidelines specific to the country.

[Hidden in reply to HeronNS]

I see. I presume they make money on subscription.

[HeronNS in reply to Hidden]

Well whatever the website is, yes. Don't know who gets the money, whether gov or not. They won't get any from me.

[HeronNS in reply to HeronNS]

clarity.co.uk/prodigy/

[Hidden in reply to HeronNS]

It would be okay for you if it included commonwealth. 😉🤣🤣🤣

[HeronNS in reply to Hidden]

You know the Commonweath was pretty much abandoned by UK when it joined EU! I remember my first visits to the UK I'd breeze right through Customs. Then with EU we Canadians were shuffled off into the queue with all the Americans arriving simultaneously on various flights, while visitors from the EU breezed right through!

[Hidden in reply to HeronNS]

You will be back on the quick side hopefully.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Maybe the Commonwealth will give us the cold shoulder! Hope not - need to breeze through NZ’s customs a few more times!

[Hidden in reply to DorsetLady]

🤣🤣🤣

[HeronNS in reply to Hidden]

I suspect not. My passport used to say that a Canadian was a British subject but I can't imagine that has been the case for decades. I must have a look through the old ones and see where it changed. Possibly with Trudeau I and patriation of our constitution.

[HeronNS in reply to HeronNS]

quora.com/Canada-is-part-of...

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Probably all about to change methinks come the dreaded B!

[PMRpro Ambassador in reply to Hidden]

It is available - you can have it if you pay!!!

[Jackoh]

Well at least they got a few things right! Hopefully by 2003 they will have progressed even further! 😜

[PMRpro Ambassador in reply to Jackoh]

2003??????

[Jackoh]

Just checking if you’re on the ball- not!! I’m certainly not!! - 2023!! 😱

[PMRpro Ambassador in reply to Jackoh]

You know how after an accident or if you are showing dementia signs they ask you about date or day of the week and so on? I can only manage date if I have the computer on - and that doesn't help with day ...

[Hidden in reply to Jackoh]

😂😂😂

[Jackoh]

Well there is no hope for me then - I had the computer/ iPad on. Just confirmed to me today that second day of reducing from 11.5 to 11mg was having more of an effect on me than I thought! 😳

[Hidden in reply to Jackoh]

I can't believe it's 20years since all that y2k stuff..... It seems like 5 years ago.

[Jackoh in reply to Hidden]

It’s obviously seems like yesterday for me!! 😂😂

[Hidden in reply to Jackoh]

🤣😂🤣😂

[tangocharlie]

The address they give for the website is wrong, it's pmrgca.co.uk (not pmrgcauk.com)

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Just tried link - still takes you to correct site.

[tangocharlie in reply to DorsetLady]

That's OK then

[tangocharlie]

They admit relapses are common

Relapses are more likely to occur if corticosteroids are reduced or withdrawn too quickly [González-Gay, 2017; BMJ Best Practice, 2018].

Expert opinion in review articles is that:

When corticosteroids are tapered, disease flares may occur frequently (an average of 1–2 episodes per person-year) and are often manifested as new-onset or recurrent PMR [Weyand, 2014].

Yet at the beginning suggest a rapid tapering to be off within 6 months!

We are lions led by donkeys

[PMRpro Ambassador in reply to tangocharlie]

They believe that flares are inevitable. Like weight gain is inevitable.

We know better

[tangocharlie]

I was talking to a woman recently who had had PMR, she said her cancer treatment was less complicated and more straightforward than the PMR experience!

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

I think if you look at the difference in numbers between those diagnosed with cancer and those diagnosed with PMR in any one year - that would explain why the treatment for the former is better organised than the latter.

Plus of course there is much more research into cancer and it’s treatment etc.

[tangocharlie in reply to DorsetLady]

Yes of course I realise that, I can just understand her frustration!

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Can’t we all!

Although there is guidance out there, I think too many doctors “do their own thing” with PMR, whereas with cancer they don’t - or don’t dare to!

[Telian in reply to tangocharlie]

My experience too - I have GCA and PMR - the cancer came 5 months into the AI and the flares that followed took a front seat every time. I've always said it, and that's not to say I didn't feel bad on the C treatments either.

Following C surgery I knew I was having a flare - the nurses doctors thought I was unwell from the surgery - only after insistence from my son did the ward contact Rheumie - who adjusted pred and I began to improve. I was in for 4 days instead of 1 because of it.

Clearly the wonderful nurses and doctors on the ward didn't understand the effects of the GCA/PMR.

[SuziCutie]

Thanks for sharing this. I intend printing it out for future reference.