I'm putting together a compilation of the feedback we have received following Dr Mackie's webinar on adrenal insufficiency last week. Thank you to those who have emailed me already or left thank you messages in the chat, then don't worry about this request as we already have those comments documented.
However, if you are a member of the charity and were able to attend and haven't provided some feedback or have put it here on HealthUnlocked where it is tricky to find, if you would like to give some feedback for me to include, then please do.
This type of information is really helpful for doctors as not only does it let them know that the information they are sharing is useful (or not, of course) but also forms part of their continuous development and review.
Your comments can be as simple as you found it interesting/useful or if there was anything specific that was beneficial you can mention that too.
Thank you.
Fran
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It would be lovely if the comments/questions didn't cover the slides. Not in Sarah's remit - and I'm sure there must be a way to move them to the side but I couldn't find one during the talk without losing Sarah!
But doesn't your pc/ipad allow you to drag it to the side? You can hide them too but if you see them they normally appear in the centre of the screen (which is very annoying) but then I just drag the box to the side.
No idea - but it is a really daft place to put a comment bubble! There must be a way to get it in the column to the right but how? You can't mess about once the talk starts and you can't see anything until you are let in.
Questions I can accept but there was general chitchat before the end ...
Yes but it should just be draggable. I had a zoom session last night and the comments/questions appeared in the centre (as they always do) and so I just dragged it to the side of the screen so I could see the speaker. That's the way I always do it. No idea if there is a set up on your pc to change the default position from the centre screen. (I agree though it seems a silly design in Zoom.)
Comments and questions come up on the right of my screen, with the speaker in the middle or just highlighted if I am on one screen. If I'm using two screens I have the shared screen, if there is one, on one screen and drag the comments/questions and participants onto the second screen. Not tried Zoom on any Apple device though.
@PMRPro - this explains about the chat bubble: If you are not in full screen mode it appears to the right. If you are in full screen mode it doesn't' say where it appears (although for me it's always in the centre) but that it appears in a window you can drag around.
Interesting - I thought that was how it worked. I clicked on the chat ikon at the bottom of the page and nothing happened. Oh well, better luck next time!!!!
Please emphasize the Cortisol 9am test at the GPs surgery - it cost next to nothing and will probably stop patients from having to nag, nag and more nag when they need the Synacthen Test, which is more expensive.
The result of that test takes the decision away from the GP.
The problem with getting a Synacthen Test is growing and I mean growing.
I seem to have been helping people to get the Syn test for yonks.
I would really like it in the Pinned Section.
I must add, I had no bother getting mine as my Rheumy was on the ball and just told my GP to order one.
Commissioning Groups have a lot to answer for, introduced un the last upheaval of the NHS. Previously a Consultant you were under - just sent you to the one s/he wanted you to see.
Now they have to refer back to the GP + more paper work and more delay. Feeling grumpy today sorry Fran.
Did not watch the webinar live but watched the recording later.Excellent well presented talk (questions did not cover the slides in the recording) with series of very useful slides. Good range of questions and answers afterwards which I found very informative.
Many thanks to Sarah Mackie for the talk and yourselves for organising and running the event.
Perhaps the following could be emphasised to others treating PMR/GCA patients -
Guidelines make tapering look easy......it isn’t for everybody, and patients shouldn’t be made to feel a failure if they can’t “comply”.
Don’t increase steroids pre COVID jab
Stick to early morning dose (as one) to help adrenal function to be more in tune with normal cortisol production - realise that’s not always possible for some (slow release meds for example)
Wasn’t aware (but that’s probably just me) that other treatments such as MTX and TCZ don’t affect adrenals as steroids.
The delayed release pred is effectively early morning dosing in adrenal terms but it doesn't affect many of us. Sarah seems to be "infecting" others with her attitudes ...
I listened to the recording and found it interesting and so clearly explained by Dr Mackie, for such a complex subject. I was interested to learn that the adrenal glands' natural production of cortisol is about equivalent to 4mg prednisolone. The 'Sick Day Rules' are very useful and reassuring to have. Many thanks to Dr Mackie for the time she spent preparing and presenting this 'webinar' for us.
Hi maria40, did you get an email about the original webinar? (We didn't email out about the recording, but we did email out about the webinar in the first place.) If you didn't, please get in touch and I can check that we have the right email for you and we have permission to email you. Fran
I never fail to be surprised what gmail suddenly decides is spam!!! Even after I have firmly marked stuff as NOT spam! But then, Google is unable to accept that any searches should be in English! And definitely not Italian - German is also on the list, hardly ever does Google speak German ...
I thoroughly enjoyed listening to Sarah's webinar, particularly the question and answer session. (I was already familiar with the booklet and have a copy of it in it's draft format last summer. ) Among other things I finally have an answer to the question about the minimum required level of cortisol required by the body.
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Optimum pred. dose vs adrenal insufficiency?
Adrenal Insufficiency treatment?
Dr Sarah Mackie and The Target Consortium paper:
