New education for doctors

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

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.

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.

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...............

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

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

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

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

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.

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

yeah three cheers for OAP'S and Eileen

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!!!!!!

They don't usually ask patients ...

Now, there's a surprise!!!!