My Ten Years on the Forum

[Charlie1boy]

Hi,

Jackoh posted recently about having been on pred for ten years, which made me to realise that is almost exactly ten years since I was diagnosed with PMR. This ,in turn, prompted me to look back at my first posts, and it was interesting to read the first reply I got from PMRpro, which was an almost exact replica of what she has continued to send almost every day for ten years!!!

Our Forum has moved forward in many ways over the years, and the introduction of Frequently Asked Questions, with thanks to, amongst others, MrsNails has proved a major benefit. I don’t know the figures, but I guess there are many more members now than there were ten years ago, and PMRpro and DorsetLady’s have been, and continue to be, indefatigable in the support and help they provide to all of us. I don’t know how they manage it.

Going back ten years, there were what we called “three aunties” - PMRpro and DorsetLady, as you would expect, but also Celtic, who was also very helpful. Today, we are also blessed to have SnazzyD, with her sound information and advice particularly related to adrenal issues, and there are many other members who help with their own experiences.

We are very fortunate to be able to access such vital information about the management of GCA and PMR without any cost. I think the NHS should be grateful too!

I can but say a huge “Thank you” to all who provide such help voluntarily.

[Longtimer]

Couldn’t agree more. Have a good 2025!

[Charlie1boy in reply to Longtimer]

Thank you. And a good 2025 to you too.

[daisylazy in reply to Charlie1boy]

Couldn't agree more .Our sincere thanks to all of them .May they be rewarded for their tremendous work on the forum .Have a good 2025 .

[Charlie1boy in reply to daisylazy]

👍. Happy new year

[PMRpro Ambassador]

Oh dear - do I REALLY always say the same thing!!

[Charlie1boy in reply to PMRpro]

Sorry if you feel that. I think the theme is usually the same, but the detail is adjusted to the individual post! Amazing!

[PMRpro Ambassador in reply to Charlie1boy]

It was a bit tongue in cheek 😄 But yes - I do try to tailor the reply, I think it is important. I suppose it also emphasises that we stick to our convictions until there is very good evidence to show something else is better.

[Charlie1boy in reply to PMRpro]

Yes, I thought it was, but we can but admire your patience and attention to an individual’s detail. We are all very grateful for that.

Wishing you good health (as far as that is possible) for 2025.

Paddy

[PMRpro Ambassador in reply to Charlie1boy]

I do have to confes to spitting feathers when there is a reply where it is very obvious the question hadn't been read in the first place!!!!!!!

[Charlie1boy in reply to PMRpro]

I think I would be spitting feathers too!

[Nextoneplease in reply to PMRpro]

I’d say you tailor the reply magnificently 👏👏

[Charlie1boy in reply to Nextoneplease]

Agreed.

[Singalong1 in reply to PMRpro]

I just want to add my thanks to the ambassadors and volunteers who have given us such valuable advice and support over the years. I am (more or less!) over PMR now; it’s been two years since I stopped Pred, but I still look in every now and again to keep myself informed. Thank you to all the contributors to this great forum. Happy new year 😊

[Charlie1boy in reply to Singalong1]

Tats good. Same with me as I have been off pred since October 2022

[Sportsgirl in reply to Charlie1boy]

And with such care and patience.

[Charlie1boy in reply to Sportsgirl]

Absolutely.

[DorsetLady PMRGCAuk volunteer]

Thank you, and yes we do often say the same thing… but with subtle nuances. One of the reasons why we decided on setting up the FAQs..

But hopefully we recognise that all are individuals- and do a bit of tinkering as and when 😊

[Charlie1boy in reply to DorsetLady]

You do, and that is but one reason that your posts are so valued. In my opinion the FAQs are one of the most helpful initiatives you undertook.

Paddy

[DorsetLady PMRGCAuk volunteer in reply to Charlie1boy]

Thanks again… and so do we.

[PMRpro Ambassador in reply to Charlie1boy]

Thankyou!!!We do as well - feel free to advertise them to people when they ask the sort of questions FAQs would help!!!!!

[Chiqui1950 in reply to DorsetLady]

Thank you all so very much!!! So truly fortunate and grateful!

[Charlie1boy in reply to Chiqui1950]

👍

[Joanbill13 in reply to DorsetLady]

Absolutely. You thee gave certainly me. Thank you so much

[Charlie1boy in reply to Joanbill13]

👍

[Charlie1boy]

Will do.

[Tinasleepyhead]

Thank you Charlie1boy for putting into words so eloquently, my thoughts exactly. How very fortunate we are to receive the valuable knowledge from these amazing members, without this many of us would be in a very different position with our PMR.

[Charlie1boy in reply to Tinasleepyhead]

👍

[Jackoh]

Agree completely Paddy. Good to hear from you. Xx

[Charlie1boy in reply to Jackoh]

Thanks Jackie. Happy New Year to you.

Paddy

[Jackoh in reply to Charlie1boy]

Happy New Year to you too Paddy!

[Dorothy61]

Couldn’t agree more. All your help is very much appreciated.

Happy New Year everyone 😊

[Charlie1boy in reply to Dorothy61]

👍

[diana1998]

Absolutely agree. This forum with our invaluable Experts is a huge lifeline.

[Charlie1boy in reply to diana1998]

👍

[Ridge]

Beautifully said. They have been a sanity saviour and support for my journey. I am deeply grateful.

[Charlie1boy in reply to Ridge]

👍

[Timelost]

I totally agree with the comments here. I don’t normally say much but I read relevant posts daily. The information is invaluable! I don’t know what I would have done without it.

Thank you so much!

[Charlie1boy in reply to Timelost]

👍

[Pippah45]

Very well said Charlie1boy. Also a good reminder to those being rushed off pred too soon to see how many of us have been here for the Marathon. I would certainly not have come through this as well without the wonderful help received. May everyone have a healthy New Year! 😄

[Charlie1boy in reply to Pippah45]

👍

[WilfDog]

Hear hear..I haven't got GCA or PMR, but sJIA and AS and other associated issues, and dropped onto this forum through the discussions about prednisolone and adrenal insufficiency. Both Dorsetlady amd PMRpro are extremely knowledgeable in this area and therefore I value their opinion greatly. Thank you for all you do to help others xx

[Charlie1boy in reply to WilfDog]

👍

[Zebedee44]

Its coming up to nine years since I first heard the words « Polymyalgia Rheumatica » and I embarked on my two year recovery!! This forum and the advice and support from the wonderful aunties and other regular members have been a constant source of understanding and dare I say friendship. We may not have ever met each other but I am daily grateful for all the friends I have come to know here. I wish you all a Happy, healthy New Year

[Charlie1boy in reply to Zebedee44]

👍

[Elispeth]

Couldn't agree with you more Charlie1boy. I really don't know how I would have coped over the years without the knowledge and help from this forum.

[Charlie1boy in reply to Elispeth]

👍

[Blackcat1M]

I agree I don’t know where I would be without PMRpro she’s been my rock through my journey.

Not forgetting DorsetLady, MrsNails with all her knowledge regarding methotrexate and Heron

[Charlie1boy in reply to Blackcat1M]

👍

[Viv54]

Well said ! Happy and a Healthy New year to all .!

[Charlie1boy in reply to Viv54]

And a Happy New Year to you too.

[Tiggy70]

Well said Charlie1boy. There have been many times in my (so far) 4+ years of PMR that I have been advised and comforted by ‘our Pro’s’. I am continually amazed and thankful at their dedication in helping us all. They rarely take a day off and we know that we will always get a quick response to our issues which is very reassuring. Wishing you a Happy New Year 🌸

[Charlie1boy in reply to Tiggy70]

👍

[Suet3942]

Hear hear!!

[Charlie1boy in reply to Suet3942]

👍

[GerriMc]

Well said! I absolutely agree. I’m eight years in and have found so much advice, support and good common sense here. Thank You! X

[Charlie1boy in reply to GerriMc]

👍

[Groda]

I so agree with Charlie 1 boy. This forum, with its helpful advice and suggestions, has been sanity saving to me. Thank you for all for being so helpful and informed.

Gratefully, Groda

[Charlie1boy in reply to Groda]

👍

[humlies]

I too am hugely grateful to you, PMRpro, DorsetLady, and others for the invaluable help that I have received. I had PMR for over 4 years, and it was such a relief to know of others in my position at a time when "everyone" recovered after a year on Pred. The detailed knowledge of medicine and medical procedures was also invaluable. Thank you all so much,and a happy new year! xxxxxxx

[Charlie1boy in reply to humlies]

👍

[random901]

Happy 2025, Charlie1boy!

[Charlie1boy in reply to random901]

And a Happy New Year to you too.

[Bothan]

Less than 2 years diagnosed and accessing advice. Totally agree, these people have given amazing advice and support. Thank you for you dedication, time and knowledge. You are amazing people.

[Charlie1boy in reply to Bothan]

👍