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.
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!
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.
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
yeah three cheers for OAP'S and Eileen
NICE guidelines as at Jan 2019
https://cks.nice.org.uk/polymyalgia-rheumatica#!scenario
Just read the NICE guidelines and I am concerned that they also follow the 2 year expectation for PMR. I note that they must be the latest guidelines as it's Jan 2019. Eek!!!!!!
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.
Margaret HI Our GPs are definitely not specialists ... They are there to refer us to a more specialized doctor in a particular disease ...thats why with PMR/GCA its advisable to go to a rhumatologist ...
Di
They don't usually ask patients ...
Now, there's a surprise!!!!
Hi r.d.s. i am under a rheumatologist at Chapel Allerton in Leeds, and so far so good.
I will be bringing this up in my next app. If the doctor says yeah you have pmr i will be making a visit to the GP
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.
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.
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.
That's very true Margaret, but it also very true with a lot of people on all kinds of subjects. We must not get too comfortable and complacent or we could fall into the same trap. I am ski instructor, I don't know how many people stop taking lessons after a day or two. I been skiing for over 60 years and still take lessons each year, it was my hobby and now my vocation. I am lucky and love to learn so I not become complacent, ready to learn about PMR, skiing, politics, solar energy, food, diet, Brexit, etc. The list goes on! We must try and learn all we can on the subject that effect, us it is our responsibility to ourselves. Please do not reply on the doctor to guide you through this PMR journey, take control, no one cares more than you! Think positive, stay active, I going for a walk in the snow, and try to smile. You get through it! 🙂
I went for a walk around the village - snow would have been acceptable compared to the sheets of ice I met in a few places all across the road!!!!!
It's positively balmy here. . I even saw someone wearing shorts! I could have been gardening at 5pm. It was still bright then.
It is absolutely glorious here - but the temperature difference is from -9C before breakfast to +9C in the mid-afternoon! That's sort of at the top of a Munro... Can't be healthy. Down in the valley is it 7 degrees warmer - mid teens in the afternoons!
I went to the local Spa yesterday and people were lying round the outside swimming pool and also swimming. One person said she had even caught the sun.