I’d never heard of PMR !: Thanks for letting me... - PMRGCAuk

PMRGCAuk

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I’d never heard of PMR !

Mandyq profile image
22 Replies

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.

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Mandyq profile image
Mandyq
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22 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk 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 profile image
Mandyq in reply toDorsetLady

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 profile image
DorsetLadyPMRGCAuk volunteer in reply toMandyq

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

123-go profile image
123-go

Hello and welcome to the 'family'. 🙂

Nextoneplease profile image
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 profile image
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 profile image
Nextoneplease in reply toKendrew

Well said Kendrew 😊x

AyJayBass profile image
AyJayBass in reply toKendrew

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

Kendrew profile image
Kendrew in reply toAyJayBass

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 profile image
Mandyq in reply toKendrew

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 profile image
Kendrew in reply toMandyq

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 profile image
PMRproAmbassador

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

jinasc profile image
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 profile image
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 profile image
Bcol

Hi and welcome Mandyq

Marijo1951 profile image
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 profile image
AyJayBass in reply toMarijo1951

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

Daffodilia profile image
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 profile image
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 profile image
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 profile image
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 profile image
Tiggy70

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

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