(I am re-posting my comment from an earlier post.)
I looked the FAQs page and if we can keep it current, we could dispose of the search bar altogether! I know that won't happen but the (updated?/new?) FAQs needs to be shouted out from the rooftops! Make a lot of noise about it, it's that good! BRAVO!!!
THANK YOU TO ALL WHO HELPED BUILD THIS!
Thank You Very Much! 🙏🏼 I decided a couple of days ago to put New Topics at the Top for about a week & will Post when ever we add anything New & aim to keep it relevant & up to date!…..
Cheers MrsN; PMRpro & DorsetLady
Thanks to all three of you 👏👏👏. You all put in a lot of time and effort on our behalf and I applaud you. ❤️
Hi, I would be lost without the help of this site, wonderful info and everyone is in the same boat.
👍👏👏👏
I quite agree...FAQs are great...but many not looking at them & continue to ask all the same questions! But the search field is great, too...I searched for adrenals two days ago...I’d read FAQ, but found more great posts from 4 years ago to read, I think search field should stay, please! BUT what I did find was the same few wonderful people answering all the same questions time after time..for years...with the same advice...and they are still repeating the same things daily now: whilst I know they love to help, this is a waste of their time & ‘abuse’ (wrong word, brain fog), of their helpfulness, & just should not happen, imho! I wonder how many people can honestly say they’ve tried the search field, or looked at FAQ, before they post?? I belong to another forum on this site, & it gets only 2-4 posts a day! Just my thoughts only, this site is wonderful & helps so many, but the repetition is staggering! Thanks to those with so much patience. I know you cut & paste sometimes, too, but that just highlights that the info is already there for folk to find! S x
Hi
Yes we do repeat ourselves - which is why MrsNails , PMRpro and myself with the help of Fran_Benson put them together.
But from a personal point of view I’m happy to repeat same info every day if it means it’s stops someone else losing sight as I did. That’s not a waste of my time.
The search facility is HU wide, whereas FAQs are PMRGCA forum only…and hopefully more directed.
As for people not looking at them first, I think new patients in particular think their issue is specific to them and/or they want reassurance from a “person” rather than just reading a general post.
And yes it is a busy forum, but that’s maybe because info is not as widely available in the wider world as for other illnesses …or perhaps it’s our natural charm and wit🤣😂
The Search Feature is part of HU so that won’t ever change - what we wanted was something that kept our Replies/Posts together for easy access, instead of ‘reinventing the wheel’ day after day. There are also excellent Replies from other Members in these Posts so we are grateful for everyone’s input.
It’s a constant feature & as things crop up we continue to add/amend.
We get a mention in a research paper as a good forum. A study done during Covid last summer found this forum had a particularly high appreciation for calming anxiety when GPs couldn't be seen - and that probably hasn't changed.
Give ourselves a collective pat on the back then 😊..
I agree...it’s because the info isn’t available elsewhere. My arthritis has recently got a lot worse & I've been given four printed booklets, had four hospital appointments with two more in the pipeline, & Versus Arthritis looks full of info, too. But PMR/GCA is something that needs more help, not less, I think, as it seems a lot if patients are left to their own devices, or do nit understand what they’ve been told, etc. Of course, I fully agree with your comment re loss of sight, saving that is paramount.
The charity is doing what it can- and has for a long time - but it’s only small and doesn’t the money that bigger one have. Local groups used to leave leaflets in their GPs surgeries or hospital Rheumy Dept, but if course that’s gone out the window since COVID.
Oh, I’m sorry, I wasn’t knocking the charity, it’s doing a great job in a difficult market...I saw a new rheumy a few months ago & she examined me & said I had obvious fibromyalgia & then she offered me the new brochure about it. As I said, I’ve got lots of arthritis brochures, too. But I’d only met one person with polymyalgia, & I think that’s the difference. Unless more people get the disease (heaven forbid) or some more well known people get it (what a dreadful thing to say), it remains small. So much has changed in Covid times, but, for charities, it’s a particularly hard time, I hope you didn’t think I was knocking the charity...far from it, I think it’s very dedicated & helpful.
No I didn't think you were, I was just explaining how difficult it is for smaller charities to get the message ‘out there’….and as you say, PMR and GCA is not well known. In fact most (including some medical people) look at you in amazement when you mention it!
I’d never heard of either until I got GCA….
I came across it when I was diagnosed with fibromyalgia, about 12-15 years ago...simply because it’s another ‘algia’! Hence, when my gp said it was pretty definite I had PMR, my first question was ‘is it another disease where half the medical profession think it’s in your head not real’? I hadn’t heard much about GCA, though. S x
Just to add - other charities in the same field have in the past been approached for collaboration. In one case, GCA was of interest, PMR was not. I suppose it also accounts for why some of the information leaflets don't bear much resemblance to what we experience.
Interesting...& I’ve yet to see an information leaflet, so I can’t comment on that, tbh! S x
About the repetition, I think it really helps newly diagnosed folks to feel engaged to get a direct answer from a real person. I'm sure we all remember how panicky WE were early in our PMR/GCA journey at high doses of pred. More to the point, those who consistently engage our newcomers are to be celebrated by the rest of us! Ours is a very emotional journey and having experts who have the knowledge AND who have lived it themselves is an incredibly valuable resource!
Again, hats off a thousand times to our "resident experts"! Ya gotta love these folks!
I couldn't agree more, & it’s because I feel they are so great that we should ‘cherish’ them & be careful to ask questions that aren’t just asking for repetition, those which don’t need individual help. Or not ask questions where answers are easy to find elsewhere! I feel some folk ask every little question that comes to mind, when an answer could be gleaned by using faq’s and search field, or a call to a gp or local surgery. ‘Nuff said! S x
Low Mood on Pred
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Liver function tests with Tocilizumab.
