So much help

Each morning I look at the forum and there is so much help from others sharing their experiences. I've only been diagnosed 7 weeks today so am really new to the whole PMR thing. I feel reassured when I recognise my own experience of it in others posts and how they are walking with this interloper in their lives. I realise all our experiences are different but finding this forum has cut through the confusion, sadness and loneliness I have been feeling. Members have been welcoming and helpful, you know who you are. Thank you all.

When I get home I will be sending a donation and looking into membership. Little Jane x

[DorsetLady PMRGCAuk volunteer]

🌸

[Kendrew]

Hi LittleJane,

I've been on here for 5yrs now, and discovering this forum has proved to be the most reliable & trustworthy source of information & knowledge that I've found..... even more so than that imparted by most of the medical practitioners I've interacted with.

It's also a truly wonderful source of support, friendship, empathy and understanding, with no judgement and always respect.

Just, honest, truthful facts & insights.

For me, it's a complete 'care package' that you'd be hard-pressed to find elsewhere...... a huge light in what otherwise could have been a very dark tunnel.

[Hidden in reply to Kendrew]

Thank you for your kind message 🙂

[Charlie1boy]

I endorse Kendrew's post 100%.I joined the Forum on the last day of 2014, and it has helped beyond measure my journey through pmr.

I have been able to be my own judge of whether or not to taper, with minimal trouble to my GP and got through to zero without having a flare thanks to the very sensible advice.

Good luck.

[Hidden in reply to Charlie1boy]

Thank you, and well done 🙂

[PMRpro Ambassador]

Glad you are here.

We aren't perfect - and occasionally feathers get a bit ruffled - but it always gets sorted out and passes. I think it helps when you get a reply that sounds a bit "off" to read it aloud in a range of different tones of voice. Sometimes it is hard to hear the jokey voice in a written reply when you can't see the face either.

[Hidden in reply to PMRpro]

I totally agree. The written word can be ambiguous, I have tripped up in the past misreading the tone of a message or email.

[sidra1968 in reply to Hidden]

Isn't that the truth.

[PMRpro Ambassador in reply to Hidden]

A lot of people do - not just neurodiverse. Unless of course we are all neurodiverse!!!!

[Hidden in reply to PMRpro]

In some ways maybe we are 🤔

[PMRpro Ambassador in reply to Hidden]

I'm pretty sure a LOT of us are! Including me - or maybe I have been infected by my family!!!

[NewPMR]

Hi, I know exactly how you feel, my symptoms started about six weeks ago and I was diagnosed a week ago. My doctor wasn’t even sure what it was but said if the pred worked, it probably was PMR. Like you come as a huge shock and I am pretty anxious about the whole thing I am on 15 MG a day and it has been working well so far. I am not sure about the tapering process, I will probably have to be guided by my doctor. wishing you all the best and hope your progress goes well.

[Hidden]

Hello, I can honestly say that this forum has been my saving grace. I have learnt so much and received input that has made the diagnosis less of the big bad wolf I feared. I'm still not well and have not yet started tapering despite the GP being keen to have me 'off Prednisolone in a few months'. I realise I am safe here and can trust the information as it comes from people who really know this illness.

Welcome, you will be safe here NewPMR

[PMRpro Ambassador in reply to Hidden]

"despite the GP being keen to have me 'off Prednisolone in a few months'."

Hope we can reeducate him on that because THAT is pie in the sky!

[Hidden in reply to PMRpro]

Will you tell him or shall I? Seriously though, I can't see the wood for the trees today 🌲🌳🌳🌲

[PMRpro Ambassador in reply to Hidden]

Hopefully he will learn by the experience - but we do have some decent reading matter you can provide him with!!!

[Hidden in reply to PMRpro]

I'll stick with you guys if you'll have me.

[PMRpro Ambassador in reply to Hidden]

Why wouldn't we? All welcome as long as they play nicely. You do.

[Hidden in reply to PMRpro]

Aww, shucks ☺️

[Hidden]

I don't think I would dare! I'm sure he has other patients with it. He is one of the partners 🙄

[PMRpro Ambassador in reply to Hidden]

Doesn't mean he knows all about PMR! However, so far he has done not too badly so maybe he was saying that to allay any fears you may have about being on Big Bad Pred for a longish time. Without realising that, actually, you want sensible and founded info not placebos that will have to be unmasked when they turn out not to have worked,

[Hidden]

I know I will be walking with Pred for some time and the taper will be slow. Not even thinking about it until after my flu jab and COVID jab next month. Saying that, although I was told to reduce too much too quickly at first, I am not back to my starting dose of 15 mg. Feeling quite comfortable at 14/13.5mg 🙂