I’d never heard of PMR !

[Mandyq]

Thanks for letting me onto the site. I’m newly diagnosed and feel like I’ve been hit by a train. Really looking forward to reading posts which will help me learn to live with this.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome…

Like most of us - never heard of the disease before you got it.

Have a look at this link for starters, hopefully help you get your head around it - and mentions other meds you should be on -

healthunlocked.com/pmrgcauk...

And then may have a look at FAQs but don’t try and take in too much, too early….you’ll just get bamboozled -

healthunlocked.com/pmrgcauk...

But obviously if anything is worrying you, or you’re not sure, please ask. Although it’s primarily a UK site, there are members all around the world, so someone always about.

[Mandyq in reply to DorsetLady]

Thank you - I’ll be working my way through the links and FAQs on the site. For something that I’d never heard of there seems to be a lot of information available - mainly based on peoples experience of dealing with it. In many ways I feel relatively lucky as I was diagnosed and medicated in less than 3 weeks after being hit by this, my new young GP was really on the ball and sent me for the relevant blood tests right away. I’m hoping the steroids will alleviate the symptoms without too many side effects.

So glad I found this site

[DorsetLady PMRGCAuk volunteer in reply to Mandyq]

Good -yes lots of info and plenty of advice -all from the coal face 😊

[123-go]

Hello and welcome to the 'family'. 🙂

[Nextoneplease]

Hi Mandyq and welcome 😊

I’d never heard of PMR either until I was diagnosed last year. I’d spent months wondering why ordinary painkillers weren’t helping…..

Sorry you feel like you’ve been hit by a train. How long have you been diagnosed? You’re on prednisolone I guess, and if so, hopefully you’ll feel an improvement soon.

All the best xx

[Kendrew]

Hi Mandyq,

I remember that feeling well! I was diagnosed May 2019 and was completely shocked and overwhelmed by such a sudden turn of events.

So...just a few suggestions that might help, based on some of the things I found useful:-

- research & learn as much as you can about your condition and medications. Most of my knowledge has been gained from this forum, which still proves to be the most reliable and trustworthy source of help & information. As already suggested...take a look at FAQ's. Lots of info here.

- don't be fearful of some of the things you may read here. We're all different and our experience of this condition will vary for each and everyone of us..... the various side effects and issues people report on here will certainly not all occur for you but it's important to know that any of those that do, can usually be successfully remediated or at the very least, significantly improved upon.

- be aware that many GP's/rheumatologists are not as familiar with PMR as they should be and don't always make the best choices for us. Don't be afraid to question, question, question! Knowledge is power! You need to be well informed so you can 'challenge' medical professionals effectively when necessary, and therefore manage your condition as effectively as possible.

- don't ever rush your steroid taper...it will most likely result in a flare of the PMR if you do it too quickly....' Slow & Steady, But Not Before You're Ready'!

- don't be fearful because it will be ok, and when you're anxious or uncertain about anything, come here for info, advice and support. There are some very experienced and knowledgeable people here who will always help if they can.

[Nextoneplease in reply to Kendrew]

Well said Kendrew 😊x

[AyJayBass in reply to Kendrew]

Kendrew, your excellent post should be saved as advice to all new folks on this forum!

[Kendrew in reply to AyJayBass]

Thankyou.

Three years with the condition, a search for 'the truth' and lots of advice and reliable information from other experienced and knowledgeable people here, have all allowed me to develop a much better understanding of some key points to consider.

I'm merely repeating what I've learnt myself, but much of what I've said can also be sourced in FAQ's.

[Mandyq in reply to Kendrew]

Thank you - so grateful to this site, seems to cover all aspects of this horrible illness. Day 2 of the steroids and feeling slightly better, hope this continues.

[Kendrew in reply to Mandyq]

The first few weeks after I began taking steroids, I felt very anxious, fearful, uncertain and confused, but with hindsight, although I did initially experience a few side effects as my body got used to the new medication, a lot of the physical symptoms I experienced were caused more as a result of the fear and worry around constantly thinking what the steroids might be doing to me!..... and to be frank.....that turned out to be a lot less than I'd anticipated!

Don't misunderstand me....I have, and do experience side effects from the steroids, but nothing so awful that so far hasn't been completely manageable through the advice offered to me on here.

Unfortunately, there will always be a percentage of people who find taking steroids extremely challenging, but for most people, if they make sensible choices they'll find it's far less scary than it would first appear to be.

Like I said, educate yourself as much as possible about both your condition and your medications and then you'll find that at best, you can avoid many of the potential complications that could emerge and at the very least, you can significantly minimise the impact of the rest.

[PMRpro Ambassador]

Hi and welcome! The rest has been said ...

[jinasc]

Hi

and when you catch your breath, please put a little bit more in your profile. Dose of Pred you were started and taking now.

Also any add-ons ie calichew etc.................

This information helps when you ask questions and there never are any silly questions, so don't hesitate to ask.

[SheffieldJane]

Welcome Mandyq ! Browse FAQs for a bit to get your bearings. Then share your experiences and ask your questions. We don’t leave anyone hanging on this great site.

[Bcol]

Hi and welcome Mandyq

[Marijo1951]

I well remember that feeling... Although I'd consulted Dr Google extensively regarding my symptoms, I had somehow managed not to find PMR or GCA (I was stuck with both!) It's well worth investing in a copy of Kate Gilbert's book ''Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide''. The second edition was published in 2016.

[AyJayBass in reply to Marijo1951]

An excellent book, so helpful for anyone new to PMR/GCA

[Daffodilia]

I also had never heard of PMR (diagnosed Oct 2018) - Kate Gilbert’s book v gd and website and this forum - good luck

[Lone_gardener]

Hi ! I to had never heard of PMR until diagnosed November 2019 , I look forward to my daily updates and articles from this group …. And relate to most . Xxx

[Purplegloss]

Hi and welcome. Always good to have a Dexa scan right at the beginning, and don't let anyone put you on Alendronic Acid until you have been checked out to see if you really need it first!

[Tapestry1057]

You have won the lottery by finding this site. It will be the best thing ever for reassurance and advice from some very knowledgeable and helpful people. It really has been a life saver for me. Good luck on your journey.

[Tiggy70]

Welcome Mandyq. Personally I have found this forum invaluable and I’m sure you will too🤗