Learning how to deal with PMR

[Sh18348]

Hello! I am very new to this and just found out I have PMR. I was in denial at first thinking I was misdiagnosed and got off of the prednisone. The pain and symptoms came back immediately. So I am back on my meds and doing better. I just read something on here about some that take prednisone have a card? Why and who do you get that from doctor or Pharmacist?

[Bcol]

Good morning and welcome to the forum. Yes, there is a blue card that you will need in case you need to let anyone know that you are Steroid dependent. There will be others online later this morning, far more knowledgeable than me, who will give you lots more information about your condition. But you have come to the right place for information and help with managing what is a long term chronic condition. There is normally someone online 24 hours a day.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

This is what is widely used in UK - shropshireccg.nhs.uk/media/...

But sure you can find a downloadable one online suitable for USA if you can’t get one from pharmacist or doctor. Or make one up on a piece of card and keep in wallet.

Might be wise to get a medical bracelet - plenty online as well.

Bit more info for you as well -

healthunlocked.com/pmrgcauk...

[piglette]

I am so sorry you have PMR, you are not alone however. I wear a bracelet saying I take steroids, I got it off Amazon, you can get necklaces too. I just thought if it is actually on me there was more chance of it being seen. A card is good back up of course. People also update their mobile phones.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

so long as someone knows the code to get into your phone!😉

[RoadTrip in reply to DorsetLady]

Can load a picture on power up screen on iPhones, I have a copy of my card there, which means do need access code.

Belt and braces also have paper copy within clear iphone case at back of phone ( not paranoid honestly!)

[DorsetLady PMRGCAuk volunteer in reply to RoadTrip]

Good plan! ...and thank you.

[piglette in reply to DorsetLady]

I heard there was some SOS thing you could put on a phone which I assume does not need a code, I just read about it, so do not have any real knowledge.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

I think you’re right - but am always a bit dubious about something that overrides a password or code.

Must have rubbed off from “my personal computer expert” aka son - will ask him (or maybe 30 years working for MoD!) - but can guess the response. 🤦🏻‍♀️

[piglette in reply to DorsetLady]

My nephew works for the National Crime Agency and he won’t let me use Facebook and all sorts of other things. Basically we are all being listened to!!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

And a lot of information garnered all the time.

[RoadTrip in reply to piglette]

If trying to open iphone with unrecognised fingerprint there is “emergency” at bottom left hand corner. If you press that there then is “ * medical id “ in red again at bottom left hand corner which can be filled in with medical information and next of kin contact.

To fill in go to health app and browse, tap profile (top right hand corner) then medical ID and fill in.

[Rosbud in reply to RoadTrip]

Thanks for this ? I’ve just managed to activate it on my phone x

[tangocharlie]

You can also get a card from the charity PMRGCAuk and it would be well worth becoming a member as it only costs £15 a year. Amongst other things, they run this forum and operate a Helpline. You can find details here pmrgca.org.uk

Also read the pinned posts of information for newbies, loads of really useful advice. And know you will always have support on here

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Can you become a member living in US? Was going to suggest that - but not sure it was applicable.

[tangocharlie in reply to DorsetLady]

I'm told you can

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

That’s good then..the more the merrier!

[PMRpro Ambassador in reply to DorsetLady]

Yes - they have several outside-UK members now they have sorted out payment options.

[Sh18348]

Thank you all so much for the information and help. I will look into this. In the meantime I will continue to research my condition. Have a blessed day.

[Tuppence55]

I have a medic alert bracelet, they also store info on any other health conditions the emergency services might need