New education for doctors

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from many of the emails i am getting and reading it seems to me a lot of doctors if not all should return to uni for a session in pmr, as they all seem arragont in proberbly a subject that they know little about.

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  • Posted

    Well here is a good one. I had to go for annual review of meds and saw a different GP. She wanted to know how I managed PMR and I said I was down to 5.5mg dropping half mg every 2 months but when down to 5 would stay there for a bit, then do the DS method given to me by the rheumie 2.5 years ago. It's the same principal as DSNS way but spread out differently.

    1st week new dose on Monday

    2nd week new dose on Monday and Wednesday

    3rd week new dose on Monday Wed and Sat

    4th week new dose on Mon Wed Fri Sat

    5th week new dose on Mon Wed Fri Sat Sun

    6th week new dose on Mon Tues Wed Fri Sat Sun

    7th week new dose on Mon Tues Wed Thurs Fri Sat Sun

    She was facinated to hear this, wrote it down and said she would give it to some of her patients who were having difficult dropping.

    I thought that was excellent and she got Full Marks from me!

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    • Posted

      at least she was interested, and not ignorant and would not listen like i one had a doctor, who said to me whos the doctor, nearly said not you mate

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    • Posted

      Three cheers for lifelong learners !

      The probably now old fashioned definition of intelligence used to be " the ability to see connections and apply them to new situations." But to see you have to be prepared to look and not everyone is.

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    • Posted

      That's all well and good, but begs the question as to why, as a doctor who treats PMR patients, she didn't know about the DS method of reduction already.

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    • Posted

      My doctor, who otherwise started me off in a very wise way, hadn't heard of this type of taper. But when I showed it to her she was fine with my trying it. Not all doctors understand how very difficult it is to wean off steroids, even discontinuing a skin cream with hydrocortisone in it can cause a rebound which is worse than the original condition. Tapering pred is much more difficult than phasing out a skin cream where there are substitutes to help ease the condition.

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    • Posted

      The vast majority of doctor who manage patients with PMR think they can reduce pred the same way they do for other things for which they use pred. Except they are not chronic conditions like PMR. Rheumatologists often get it wrong because they forget that, for PMR patients, pred is the equivalent of the DMARD for rheumatoid arthritis. They use pred for flares - and have been educated that it is dangerous to use it long term so they are desperate to get patients to a low dose or even off it even though that isn't likely to work well.

      In all the years I have been on the forums, I have come across 2 doctors who taper slowly - one of them in the USA has a website with a reduction approach very similar to the Dead Slow and Nearly Stop approach. They just tend not to understand and use the way they use for everyone else. Many tell patients there will be flares, it is the nature of the disease. Guidelines have been based on the history.

      This paper:

      http://www.rcpe.ac.uk/sites/default/files/quick.pdf

      presents an approach that reduces the rate of flares from 3 in 5 to 1 in 5. I suspect the flares all occur below 10mg - after they start the patients reducing again having kept them at 10mg for a year, they don't go below 10mg until some 15 months after they have been diagnosed. And in my experience - that is the period when the cause of the PMR is most active in the majority of patients. Leave them at an adequate dose and they are less likely to flare. But too many doctor are terrified of using 10mg - because they have been taught that all patients will develop diabetes, their bones will crumble and whatever else. It isn't true and even for the ones who do develop those problems, it can be managed when you know how.

      That is what the charity is trying to achieve - education and a change in attitudes for the benefit of the patients.

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    • Posted

      Thanks Eileen, for putting up that link . Not that i can get too technical , so i dont really read much of the medical jargon, but that reference was about the best i have seen on PMR. It just seems that at last somebody is on the right track. Reading a lot of the posts on these forums leads me to believe that the sooner people learn to self medicate the better off they will be, because the time waiting to see a medic means that the PMR is getting too much of a start. (i know that sounds easy when you say it kwickly) ....... I wonder what happened to that Doc that had PMR and was going to keep us informed on his progress...............

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    • Posted

      That bit about self medicating was for people that have been correctly diognised and are on their PMR journey ,not newbys. ...............

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    • Posted

      Is it possible to edit ones post here. ?????????

      What do you do if you are not satisfied with your reply. ????????????

      Thanks in advance ......................

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    • Posted

      No, unfortunately, although people are always asking and a whole bunch of things have been changed on this forum we still can't edit. You can ask the moderator to delete a post if it is something important enough you want to change.

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    • Posted

      Thanks Anhaga, Yep ,it would be good to be able to edit as i mostly do my best thinking after i post something ..............

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  • Posted

    I do think a lot of younger ones are very open to learning from patients - it is older and, dare I say it, perhaps less broadly educated GPs (and rheumies) who struggle with having patients who know what their illness does to them and how best to manage it having discussed it with other patients. They are used to patients not being in touch - and the internet has changed all that as our generation is increasingly computer-savvy.

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  • Posted

    NICE guidelines as at Jan 2019

    https://cks.nice.org.uk/polymyalgia-rheumatica#!scenario

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