Steroid card

[zoey12]

Could anyone tell me if I should be carrying a steroid card. I live in uk. I am on predoslone since jan 2022. Now on 7 mg. and feeling fine. With pmr Or should I have a I d bracket. Or not bother at all

[HeronNS]

Yes. If you are for any reason unable to take your pred, e.g. heaven forbid in an accident and hospitalized, you are at high risk of adrenal crisis. First responders and other medical people need to know you are taking pred. (We don't have the cards in my country, so I wear a bracelet which includes a PIN for first responders to access an account where all the pertinent info is kept.)

[Sirtomas in reply to HeronNS]

I have been on steroids, a decreasing dose, since Sept 20 and have always had a blue steroid card from my lovely GP

[DorsetLady PMRGCAuk volunteer]

Would be sensible to have both.,

This link gives details -

healthunlocked.com/pmrgcauk...

[zoey12 in reply to DorsetLady]

Thank you I think I need to sort it out just to be safe

[DorsetLady PMRGCAuk volunteer in reply to zoey12]

Yes you do..there are lots of bracelets online - made mine into a feature -and still wear it now .but without the medical info…and I carried steroid card for a couple of years after I came off Pred.

[HeronNS in reply to zoey12]

If you do decide to get a bracelet (rather like DL I like mine and will miss it when I don't need it any more - the medical symbol is integral part of it) there are many available. I would recommend Universal Medical ID as when you buy it they give you free lifetime access to an online place where you can store medical and contact information. This is accessed by first responders via a PIN which is engraved on the bracelet, as well as anything you think needs to be known. Mine simply says prednisone, and current dosage is kept updated by me on the website. People with other medical conditions can also store info about those.

[SnazzyD]

I carry a card and wear a bracelet even since stopping in Aug 2020 and feel ok. I have since had 4 occasions where I had insufficiency that made me feel ill out of the blue when my body had unusual challenges. I handled it but it just shows that should I have an accident I may need some extra even now.

[zoey12 in reply to SnazzyD]

Thanks yes sounds like you need the card still to be safe. I will have to look into it with doctor incase something happens to me I think I would need one for a couple of years thanks

[DorsetLady PMRGCAuk volunteer in reply to zoey12]

See this -pmrgca.org.uk/steroid-emerg...

[SnazzyD in reply to zoey12]

I’m sure most docs would say I’m fine and indeed I’ve been discharged by the Endocrinologists as such. It was a great surprise when I did go off the rails and now don’t ever assume I’ll be ok 100% of the time. I don’t go out without a packet in my bag.

[powerwalk in reply to SnazzyD]

Snazzy what way does that affect you?

[SnazzyD in reply to powerwalk]

You mean nowadays? I feel normal apart from whatever my body decides it’s dealing with, but to all intents and purposes that’s normal now. I don’t have to think too much about about my daily activities in terms of energy but I think being more careful is hard baked now . Adrenal insufficiency attacks feel like a sudden hard to describe total emptiness beyond what is just plain worn out. I’ll feel hollow. I might feel nausea, weak, vague abdominal pain, trembly but without visible shaking, out of breath without being puffed, unable to focus, deep feeling of foreboding but not panic, just a deep feeling I’m in trouble. I can’t move for fatigue and just want to sleep. Food doesn’t help and if it’s bad, resting doesn’t help either. This is beyond fatigue that I get from overdoing it. It’s impossible to say if any minor adrenal insufficiency is indistinguishable from normal fatigue. To put over doing it into perspective for me here are a few events since I stopped in Aug 2020 feeling ok and having spent a year getting from 1mg to zero. I bore you with this because it shows that the stressors can be different.

Feb 2021 with end of long Covid too - My daughter leaving home and going with her to her new home in London. Very emotional all day. Carrying light bags up and down 6 flights of stairs. Not much to drink and eat. On the go all day and building up to the big drive away in the evening feeling mildly upset all day . 3pm bang, got all the above.

Not sure when - a deer got stuck in our garden with my two dogs hellbent on its destruction. Wrestling dogs and deer several times and then falling hard while running, all over 20 minutes did for me an hour or so later.

Early 2020 (on 0.5mg)? - Went on fell walking holiday and embarked on a 3 hour walk (40 min for the fit) up hill. My already flakey Achilles started to whinge which became screaming pain with each step for two hours. Got to top and I nosedived even though my legs and puff were gratifyingly in good shape. That was nearly a mountain rescue job.

Oct 2021 - Travel - very early start, stressful car journey, stressful airport, 10 hour flight, 4 hour time difference. Very hot at destination, stood in long cues for Covid checks, followed by hour long windy van journey. We all felt horribly car sick that took an hour or two to go. Managed all that but had a bad night due to time difference and evening arrival. Ate breakfast and was ready for the day then, you know the rest. Felt so ill I couldn’t even lie by the pool.

Just edited due to reading another post here. Forgot wanted to eat something salty.

[powerwalk in reply to SnazzyD]

Thank you. Its there in the background ready to pounce, one wonders does it ever quite heal properly. Thanks for this.

[SnazzyD in reply to powerwalk]

Who knows. I expect in some it does and others it doesn’t quite. Mine seems to get tired. I’ve never had an episode whilst ill though or after a quick shock like falling over with nothing else after.

[Maisie1958]

Hi -definitely say yes to carrying card etc however when I fractured my proximal humerus last year no one was interested in my prednisolone intake apart from saying could delay healing. And again when l had an appointment with GP in November 2021 (on3mg prednisolone) as I was feeling very woozy- low BP, craving salt and dizzy- all they said was drink more water, I’m not sure people pay attention to it! I’m fine now! 😊

[PMRpro Ambassador in reply to Maisie1958]

That was the reason for the introduction of the new red patient steroid card! Doesn't seem to have percolated through does it! If a patient is craving salt - that should be a red flag and drinking more water is likely to make it worse ...

[Daffodilia]

I got one from pharmacist

[Blackcat1M in reply to Daffodilia]

Thank you for this advice, I have a blue one so maybe I could get one of the new ones will pop into my chemist.This is a great forum for up to date information.

[Golf-1]

Hi zoey, I was diagnosed PMR in March and pt straight on to Pred, the leaflet in the packet said I should have a Blue card, next time I went to Pharmacy I asked if I needed one and they gave it to me there and then to fill in, now when I collect repeat prescription for Pred they fill in the medication they have just supplied.

[Rugger in reply to Golf-1]

It's not just the blue card, but the red one too! pmrgca.org.uk/steroid-emerg...

[cathygalbraith]

I have been on pred for 10 years my GP issued me with a steroid emergency card.

[Orla1968]

I’m in UK and I have one. You can pick them up from most Pharmacists.

[Jigsawlass]

I have a blue one from the pharmacist which has my dose on and a red steroid emergency card from the pharmacist at my surgery. I carry both with my phone

[Seacat30]

Yes - mine was issued at the hospital as soon as I was diagnosed.

[Exflex]

I was admitted to hospital with my body in shock for some reason. Long story but here’s the short version, I informed the doctor I was on 12 1/2mg and he said you’ll have to stop taking them because we’re giving you antibiotics. Second Dr spoke to me and I repeated what I was told and he said we need to double your dose. As it transpires, the reason for hospitalisation was a cytokine storm.

[PMRpro Ambassador in reply to Exflex]

Was the first doctor trying to kill his patients off?

[Exflex in reply to PMRpro]

You would have thought so. Left to him I possibly wouldn’t be typing this! (He must have been straight out of University, he was tasked with putting the line into a vein and I’m aware they give the freshmen and women these ‘menial’ tasks to gain clinical experience.)

[PMRpro Ambassador in reply to Exflex]

Hope someone enlightened him ...

[Exflex in reply to PMRpro]

When the universities chuck them out in June / July into hospital they refer to it as the killing period as death rates increase due their inexperience.

[PMRpro Ambassador in reply to Exflex]

Oh I know - I worked in the NHS! Never go to hospital the first couple of weeks in August or February though it has changed a bit, the change-overs are spread over all the year now

[ChinaWuntoo]

Yes to both - or all three (red,blue,bracelet etc)

I wear a bullet shaped thing round my neck and keep the card in my wallet. You never know when an accident could happen.

My GP said nothing to me when I was diagnosed in January 2020 but I got one from the pharmacist.

Also, I received a blue card with my latest issue of Newswire.

[5lupins]

Wondering now if this happened to me !!Coming down stairs early morning in March started to finish jigsaw before getting drink or breakfast. After a while I felt strange and went to sit in comfy chair. I put the heating on and made a drink but forgot about breakfast! Really ill so rang son.It was odd as I kept coming and going. Realised I had not had steroids or breakfast I got them but could only eat really slowly, like in a dream.

When son arrived I was a bit better and after further drinks and hot water bottle started to improve. I thought that it was hypothermia and have been very careful to keep warm enough since..

Now I am wondering if it was a combination of being cold and lack of steroids as I was so strange. 😵‍💫. Jen

[PMRpro Ambassador in reply to 5lupins]

Or there are other things it could have been - and the best thing to have done was call 999 just in case it was a TIA or even stroke.

[5lupins in reply to PMRpro]

Couldn’t think straight and was much better when son arrived. Thanks for input, hopefully won’t happen again. 🤗

[Broseley]

I was not told anything about a steroid card by the GP or pharmacy, or even the rheumy. I only found out about it from this site. No-one locally had any so I printed out the one on this site. However this is the first time I have heard about red and blue cards. What's the difference please?

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

This is emergency card -which now everyone should have -healthunlocked.com/pmrgcauk...

Both Rugger and I have linked info from charity’s site in this thread

[Broseley in reply to DorsetLady]

Thanks, that's the one I printed out. I've now also got a medic alert bracelet and card listing all my meds and conditions. Do I need a blue card too?

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

It's up to you, the blue card does have space on it to amend your doses, the new one doesn't.

In my day on steroids only the blue one was available - so that's what I used...

[Broseley in reply to DorsetLady]

Ha ha! Having stated yesterday that I didn't get a card from GP etc - I've been on pred since Sept 2021- today I get this text from the GP!NHS Steroid Emergency Card: You are taking long-term steroid treatment, received repeat courses of steroid medications/cream in the past 12 months or your clinician feels it appropriate for you. You should not stop suddenly taking your steroid treatment, unless advised by a clinician. Complete the card with your details. Keep it safe. Have it ready to show any healthcare professional you see. Any problems email [e-mail]

To view your document, please follow this link ...

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Someone’s ears must have been burning 🔥 ..

System does work then- albeit slowly 😉

[PMRpro Ambassador in reply to Broseley]

It was flagged up on the forum - there was concern that healthcare professionals weren't sufficiently aware of the risks of adrenal insufficiency in steroid users so a new card was designed for use in England and Wales.

pmrgca.org.uk/steroid-emerg...

This is the linkk for Scotland:

healthcareimprovementscotla...

These have further details:

endocrinology.org/endocrino...

addisonsdisease.org.uk/news...

It would appear after nearly 2 years - the information still hasn't reached everyone ...

[cmToddy]

Hi you should have a steroid card, which you can get at the pharmacy

[discoballs]

I carry a card. Always.

[Mystik]

I carry a card all the way one plus all the medication I currently take

[Rosbud]

I had A text message from GP , telling me to pop in to surgery and collect Steroid Emergency Card (red ) I already Carrie blue steroid card and wear A bracelet x

[Bcol]

I have a red steroid card and a bracelet which I wear at all times.

[Tiggy70]

I always carry a blue card and wear a bracelet but I wasn’t aware of a red card. I’ll look into it.

[ubaoz]

I wear a bracelet and have more info on my smart phone that medics can access without login, but there's no steroid card system here in Australia that I know of.

[Dochaz]

I've no idea whether these cards exist in France or not and no doctor has mentioned it to me, so I'm going to enquire asap. Lots of useful info in the replies.

[Theziggy]

I just took a picture of my diabetes card on my mobile phone and use it as the screensavers so it is the main image anyone sees when they look at my phone

I was going to post a redacted image here but can't find it on my PV it must be on my phone!

[Groovykindoflove1992]

I had a red card sent to me early on in treatment, along with a long document about sick day rules 👍

[Theziggy]

Most pharmacies should be able to supply you with the red steroid card.

[AyJayBass]

I have a card. On my phone I have an "In Case of Emergency" App which shows on the lock screen. I have a meds list in my wallet. I also wear this bracelet: amazon.co.uk/gp/product/B00...