hello everyone : hi! I’m so happy to find your... - PMRGCAuk

PMRGCAuk

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hello everyone

Nononny profile image
15 Replies

hi! I’m so happy to find your website… I’m not diagnosed with anything yet, just had my first gp appointment after months of struggling and not telling anyone.

I had a full and active life, now I can get in the bath but can’t get out, can’t walk properly never mind going on my annual skiing holiday, can’t get upstairs without agony, can’t get in or out of the car without agony. I’m tired and worried. This is sooooo not like me running at a million miles an hour!

bloods done today just waiting on results. Nice to know I’m not alone xxx

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Nononny profile image
Nononny
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15 Replies
piglette profile image
piglette

I do hope they can sort things out for you. PMR does not have a definitive diagnosis as such. As a test they often try a test for week or so on steroids, usually around 15mg. Steroids really can have a magical effect on PMR bringing you back into the land of the living. Not everyone has raised inflammation markers which can make doctors think it is not PMR which can be frustrating. Good luck.

Nononny profile image
Nononny in reply to piglette

That’s so lovely of you to reply…. It’s so strange to have this happening to my body which usually was so active!!! I’ll let you know how I get on… what is your story? X

SnazzyD profile image
SnazzyD in reply to Nononny

Oh there are loads of us used-to-be-so-actives here.

Nononny profile image
Nononny in reply to piglette

oh and they prescribed naproxen but not keen to take them… any thoughts???? X

SnazzyD profile image
SnazzyD in reply to Nononny

Doesn’t normally have a great effect on the pain and shouldn’t be taken with steroids IF you get to start them .

piglette profile image
piglette in reply to Nononny

It may be worth mentioning to whoever prescribed the Naproxen that they contra indicative with steroids as they should be aware. I know my doctor wasn't . She pretended she did when I pointed it out though!!

Carrollee profile image
Carrollee in reply to Nononny

I was offered naproxen as it was decided at that stage that I had arthritis, I said no but months later as it all deteriorated I decided in despair to try them. After 10 days I stopped them as nothing had changed. It had only got worse. The steroids were the game changer. Hope you get answers soon 🤗

SnazzyD profile image
SnazzyD

Sounds like it could be PMR but it can be difficult to get a diagnosis, especially if you are one of those who have normal inflammation markers with it. Doctors can trial steroids and should go for symptoms first, not blood tests. You sound like you are quite debilitated so don’t be fobbed off if the Naproxen doesn’t work properly.

random901 profile image
random901

Hi Nononny! My 96-year-old father is more mobile than me atm - I'm 68. Have just walked up to local shop 100m away on the flat to get milk - snail's pace and duck-waddle, and getting in and out of the bath is out of the question. Finally got diagnosed GCAPMR last October, after much delay (on my part) and misdiagnoses (fromGPs). Pred brought instant relief but I have a long way to go. All the best!

Bridge31 profile image
Bridge31

Hi Nononny

Welcome to our club that nobody wants to join. It should be symptoms first. If 15 or 20mgs of Pred gives almost instant relief from pain and agony then why not try it straight away ?

You will get lots of excellent advice on here about anything you wish to ask.

Please keep us posted. 🌸🦋🌸🦋

PMRpro profile image
PMRproAmbassador

Hi and welcome!

You could try the Naproxen - it almost never helps with PMR! Which is a brick in the wall of evidence ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi and welcome…

..and running at a million miles an hour sounds very familiar for PMR candidates … have a look around FAQs so you know what it’s all about should it be PMR - maybe starting with this -

healthunlocked.com/pmrgcauk...

Koalajane profile image
Koalajane

hi and welcome.

Just a warning, it took a few months for my diagnosis as doctor took time ruling other things out, so I had blood tests, MRI, urine tests and then diagnosis!

Good luck

S4ndy profile image
S4ndy

Hi and welcome. I take anti-inflammatory meds along with my steroids. Not all the time but just when my osteoarthritis flares up. It's worth a try with naproxen as if it works then it's unlikely your pain is PMR. If it doesn't work you can report back to your GP. I was one of the very busy people and now think that maybe that lifestyle didn't do me any favours!

Avadip12 profile image
Avadip12

well if it turns out that your blood demonstrates PMR , the steroids will have you sorted within days . And you will be able to go skiing. Good luck you get sorted soon

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