Magazines can print inaccurate information too!

[Kendrew]

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!

[Bcol]

Think Doctor Dawn needs to go back to med school!!!

[Charlie1boy in reply to Bcol]

Yes, but what are they teaching at Medical School???

[Bcol in reply to Charlie1boy]

Makes you wonder doesn't it.

[PMRpro Ambassador in reply to Bcol]

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 ...

[Bcol in reply to PMRpro]

I can understand that's true for those in training and just starting their careers, but given her background it doesn't really apply to her.

[Charlie1boy in reply to Bcol]

👍

[tangocharlie]

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?

[PMRpro Ambassador in reply to tangocharlie]

Dorothy Byrne used to do a lot.

[tangocharlie in reply to PMRpro]

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.

[123-go in reply to tangocharlie]

Was it entitled, “My Memory Sometimes Lets Me Down”? 😉

[tangocharlie in reply to 123-go]

LOL 😆 🤣 😂 I think one was about people being addicted to social media. Many years ago now when it was all new

[123-go in reply to tangocharlie]

Well done!🙂

[Kendrew in reply to 123-go]

😂😂😂😂

[tangocharlie in reply to 123-go]

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 😂

[123-go in reply to tangocharlie]

The mind boggles! 🫣😂😂

[PMRpro Ambassador]

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?

[123-go in reply to PMRpro]

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!

[PMRpro Ambassador in reply to 123-go]

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!!!!

[123-go in reply to PMRpro]

-or has it herself!

[Nextoneplease in reply to 123-go]

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…...

[PMRpro Ambassador in reply to Nextoneplease]

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!!!

[123-go in reply to PMRpro]

Include a link in the article- ‘PMRGCAuk: Tapering Plans’…?😉

[PMRpro Ambassador in reply to 123-go]

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 ...

[Kendrew in reply to Nextoneplease]

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.

[123-go in reply to Kendrew]

Who, if anyone, fact checks medical articles in popular magazines? There should at least be references from trusted sources at the end.

[Kendrew in reply to 123-go]

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.

[123-go in reply to Kendrew]

Absolutely. Guidelines are exactly that: a guide.

[Charlie1boy]

Well done for posting.

This is why I posted last week about the lack of progress in medical knowledge with PMR and GCA.

[tangocharlie in reply to Charlie1boy]

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'

[DorsetLady PMRGCAuk volunteer]

Oh.. for flip sake!