I've just been reading a well known women's weekly magazine, and come across this!! Oh dear! Somewhat worrying and yet another reminder of the lack of knowledge many medical professionals still have!
Magazines can print inaccurate information too! - PMRGCAuk
Magazines can print inaccurate information too!
Written by
Kendrew
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60 Replies
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Think Doctor Dawn needs to go back to med school!!!
Yes, but what are they teaching at Medical School???
Makes you wonder doesn't it.
Depends on the medical school. Leeds teaches them loads! But in general, PMR/GCA won't be much of a topic until you specialise in rheumatology. If you only do a 6 month GP rotation in a hospital rheumatology department you may not meet many, any, PMR patients. GP land covers a LOT ...
👍
Shocking, but to be fair it's often the guidelines Doctors use and refer to that are wrong. Someone should write to her and give her correct info and try and get her to do an accurate article on PMR/GCA listing the charity's details. Getting articles about PMR and GCA in Women's magazines would be a great way of spreading the word. Maybe Fran Benson has some good contacts in that world?
Dorothy Byrne used to do a lot.
I have a friend who used to be the Health editor on Bella magazine. I'm sure if somebody wrote to Dr Dawn it would get passed on to her. These magazines also pay people for real life stories - I once got £100 or so for telling my story about something, I can't remember what.
Was it entitled, “My Memory Sometimes Lets Me Down”? 😉
LOL 😆 🤣 😂 I think one was about people being addicted to social media. Many years ago now when it was all new
Well done!🙂
I don't think it was one of those "I didn't know I was pregnant til I gave birth in McDonalds" ones anyway, that would have got me more money 😂
The mind boggles! 🫣😂😂
🤣🤣 this thread is making me laugh so much I’ve spilt ne morning tea 🤣
😅🤣😂
Must have been good then!😂🤣😂🤣😂💐💐💐😜
PMRproAmbassador
Sorry - but it isn't that bad. That is the normal recommended approach from 10mg. One mg reduction every 2-4 weeks. And it will work for some. "She" says speak to your doctor, and that it is a "rough guide". In the context of this sort of article you can't ask for much more - they haven't the space. We don't know WHEN last year - a month. 6 months, 12 months. All that is missing is that it is the PMR that is in charge but how do you explain that in one sentence?
I think it’s the “..1mg A DAY” that’s confusing. “Reduce by 1mg every two to four weeks” would be the correct phrasing while acknowledging that could well be too fast for many. Better still, the doctor should become a member of PMRGCAuk. I’ve looked up her contact details….media enquiries only!
We are Social Media ...Oh yes - I don't like it either. But unless she has loads of PMR patients she may not have discovered the truth!!!!
I agree - it’s the ‘a day’ term that is most misleading.
Even though as we know only too well, 1-2mg ‘a month’ is often impossible to achieve…...
But how do you convey the concept of going from 8mg every day to 7mg every day at intervals of one month without writing all round the houses. And they have a strict word count to stick to!!!
Include a link in the article- ‘PMRGCAuk: Tapering Plans’…?😉
Mmm - but if the author really is a medic (not just a medical journalist using AI which is quite possible), then they should be sticking to officially issued guidelines that are backed by publications. That applies for a lot of the guidelines, must be based on publications ...
Agree. But better not to publish than to mislead.
But it isn't misleading - that is my point, It is entirely in line with guidelines.
Not with the UK Nice guidance which states:
“Reduce the dose by 1 mg every 4–8 weeks until treatment is stopped”
What guidelines are you referring to? Really curious to read 🥰
ard.bmj.com/content/74/10/1799
says "Tapering once remission is achieved (following initial and relapse therapies): Taper daily oral prednisone by 1 mg every 4 weeks (or by 1.25 mg decrements using schedules such as 10/7.5 mg alternate days, etc) until discontinuation given that remission is maintained."
However - I don't know, but I suspect this may have been based on an AI search and that will probably not have picked up the nuances between tapering in PMR taking patient symptoms into account and tapering for other uses of longer courses of pred in rheumatology as in flares of other illnesses.
Thank you. The article says 1mg a day - it was that which I was referring to and seems to be at odds with what you quote too.
I think that's the point I was probably trying to make, but not very well.The doctors follow the advice as stated in the official guidelines, but as we're all aware, there are so many variables to consider when tapering. This article makes the whole process seem so simple, and frequently, it most definitely isn't.
Who, if anyone, fact checks medical articles in popular magazines? There should at least be references from trusted sources at the end.
Yes. I agree. At the very least it would be helpful if they perhaps stated what the guidelines say but then explained that there were other considerations to be mindful of that could significantly influence them.
My whole working life was in newspapers, magazines and radio stations with time and space to fill without it costing too much. Apart from selling the space, which is not always the best revenue, letters, competitions and advice columns are good fillers and rarely checked or verified as the editors assume ‘qualified’ submissions to be correct and the publication is exonerated as the writer is responsible. Membership publication like the BMJ or IOP exercise more control as they are not led by money but service to their readers.
That’s interesting : thank you. I’m not surprised about lack of verification but not good if the reader doesn’t do their own research. A case for ‘people before profit’ ??
Sadly, in the world of publishing be it radio or periodicals, profit comes before anything else. These days of course the cost of ink, paper, postage combined with online reading means physical reading is much declined. I avoid SM apart from HU which is remarkably free of ‘unverified’ input but understand much SM is mainly populated with money makers of one sort or another. It’s just the way it is now.
“That is the normal recommended approach from 10mg”
Really?? 10mg a DAY?? 😳 I thought the ‘normal’ recommendation is 10mg a month isn’t it? 🤔 If so, it isn’t a matter of “all that is missing is that it is the PMR that is in charge” and neither is it due to strict editorial guidelines. It’s plainly wrong information.
The usual dose for pred in PMR is a starting dose of 15-20mg/day. Taper to 10mg/day over a period of 6-8 weeks is a commonly seen instruction. Then, from 10mg/day you taper at 1mg per month, so 1 month at 10mg/day, 1 month at 9mg/day, 1 month at 8mg/day, 1 month at 7mg/day and so on.
Well done for posting.
This is why I posted last week about the lack of progress in medical knowledge with PMR and GCA.
Progress IS very slow indeed, fristratingly so for us sufferers, but things have changed for the better in the last decade. We have a new generation of rheumatologists who I'm hopeful will make a difference to our lives and ever better diagnostics. We have potentially new treatments if they are allowed to become more widely available eg Tocilizulmab. Patient power through social media like this forum. There are some reasons to be cheerful at last but we need to continue to fight the good fight, 'be a pain in the bum til something gets done'
Surely, SURELY the medical profession realise that these forums are here. Here because patients need them and that they are full of knowledge acquired over the years from sufferer’s and the entire contributions from all manner of medical professionals they’ve been subjected to over the years. SURELY they can see the value of this pool of knowledge, experience, opinion and current thinking. SURELY they value the word of the patient rather than the one hour they may have spent on the subject during training. Even if they don’t, SURELY they want help us get better and will listen.
Some realise the value - even if we do sometimes disagree. But a lot see only "internet", "Dr Google", "medically uneducated patients" and then when a patient has the temerity to suggest another approach or view, some are either so arrogant or so threatened they react very badly.
Agree completely.
DorsetLadyPMRGCAuk volunteer
Oh.. for flip sake!
Hi Kendrew. I have just been diagnosed. Please explain what is wrong with this advice. Thanks
Although the tapering advice is theoretically in line with some guidelines, it misses out the a crucial bit which is that the dose and taper may need to be adjusted for the individual patient. We, as experienced patients, know that in reality it is far too fast for the vast majority of patients. It is also not really clear from how it is put what they really mean relating to 1mg per day. They did at least emphasise the person should speak to their doctor.
Ah, sorry, just realised there's a whole ream of comments below which clarifies the problem. I did not misunderstood the guidance at first reading. But as had been stated - consult your doctor 😊
It is an ambiguous sentence but think it means reduce Img every 2 to 4 weeks, that's how I read it
DorsetLadyPMRGCAuk volunteer
As Karendeena says it’s ambiguous.
Those in the know are going to read it as reduced current dose by 1mg every 2-4 weeks.
But it can also be read as lose [reduce] 1mg every day for 2-4weeks.
Agree, magazines should be careful how they explain things
Yes, very worrying. I'm doing my bit for doctor education in terms of being a Patient as Teacher(PAT scheme) in my local surgery. They have a student from Medical School in for 6 weeks about 3 times a year and I go in and present as a G CA/P MR patient. I have to role play and let them diagnose, it's interesting to find how little they know! No idea that GCA needs treating as an emergency. I tell them about this forum and pass on ways they can help their future patients understand and manage their condition. We are so lucky with our surgery, diagnosed me immediately, completely happy to let me control Pred tapering, whether or not to take A A etc. Even sent me a Xmas card with a Waitrose voucher.
If it’s in a magazine, it could be a typo ..
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