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
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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.
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!!
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.
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!
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.
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 ...
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! 😳
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!
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!
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.
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.
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