Steroid cards - Do all people have them who need them?

[StriatedCaracara]

Just wondered what the current rules are about steroid cards.

Who issues them?

Just wondered what proportion of people taking steroid say predisnolone, over 3 weeks, had them.

Also wondered what symptoms to look out for if there is adrenal insufficiency.

I guess some symptoms could be flare-like (eg tiredness) making it hard to tell the difference

[DorsetLady]

This link contains loads of information - it's from the PMRGCAuk forum - which I believe you were on originally so you should be able to read it - most info refers to UK, not sure your place of residence, but might help -

healthunlocked.com/pmrgcauk...

But your prescribing doctor or pharmacy should provide....

The PMRGCAuk charity also has info in it's website -

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

[StriatedCaracara in reply to DorsetLady]

Hi thanks,

I left the group as was not diagnosed with GCA in the end.

Asked question as think there is a gap appearing and cards not so easy to get.

Googled today and found entry at top that said chemists no longer issuing due to complexties in process.

Not sure everyone in this group knows they should have them..if on steroid treatment more than 3 weeks.

Not always being discussed when prescribed I guess.

Complexities of modern health care...and who does what, and takes responsibility too

[DorsetLady in reply to StriatedCaracara]

I guessed that’s why you left -but you still need a card - so try Rheumy or GP -but you can still download one -it’s not for a specific illness - anyone on long term steroids.. see here -

endocrinology.org/adrenal-c...

[StriatedCaracara in reply to DorsetLady]

Excellent, I'll download one 🙂And link this to another post..

[Spanielmadlady]

I have a blue steroid card and a red and white one which I must carry at all times

Red and white adult steroid emergency card

[PMRpro]

You will probably find this interesting:

thieme-connect.com/products...

and this

frontiersin.org/articles/10...

The UK is way ahead of most of the world in bringing this unmet need to light - but even so the HCPs seem very resistant to education and continue in their former ways

[Sarah74]

I’ve got one but it’s so worn I need another. The Gp didn’t have any 🙄so I’ll have to ask next time I’m at hospital

[DorsetLady in reply to Sarah74]

Download one as suggested higher up in thread - - healthunlocked.com/lupusuk/...

[Unpacked]

Hi I have been taking prednisolone for 5 years now and never been issues a steroid card in that time . However I had a check up appointment a couple of weeks ago and when I got my next prescription a card was in with it , I was also wondering the same thing when did this become a thing and why now .

[Krazykat26]

I have a blue one that was issued by the pharmacy and then a couple of years later I got the red n white one from GP..her suggestion. I keep one in my symptom diary and the other in my purse. 💜🌈Xx

[Florence91]

Hi thanks for your question Have been on prednisolone for 15 years now and unlikely to get off it. Have only ever had the original blue card from the pharmacy! Will investigate!

[StriatedCaracara in reply to Florence91]

I'm not sure of the difference.

I tried to read up got more confused..

[DorsetLady in reply to StriatedCaracara]

if you scroll down through this post to the section on steroid cards, it explains that emergency card was introduced (in the UK) in 2020..and the difference between them.

healthunlocked.com/pmrgcauk...

[Spanielmadlady in reply to StriatedCaracara]

In a nutshell the blue card is patient instructions the red card is to alert health care staff to those who are at risk of adrenal insufficiency should they become ill hence the reason it should be carried at all times.for those of us who are steroid dependent steroids are classed as critical medication on the red card.

[StriatedCaracara in reply to Spanielmadlady]

Thanks SpanielMad.

Was getting so lost.

Needed it in a nutshell 😊

[DorsetLady in reply to StriatedCaracara]

Think that what it says in my linked post ..

[Spanielmadlady in reply to DorsetLady]

I couldn't open it x

[DorsetLady in reply to Spanielmadlady]

That's because it was written on another forum, so you need to join that forum [albeit temporarily] to read... but I know SC used to be a member of the PMRGCAuk forum, so she could read it...

but no matter she now knows the difference... which is what she wanted😊

[Spanielmadlady in reply to DorsetLady]

That's all that matters x

[StriatedCaracara in reply to Spanielmadlady]

Hi SpanielMad

I've just been to the GP in-house pharmacy.

They gave me a blue steroid card.

Celebrating a bit of success..

[Spanielmadlady in reply to StriatedCaracara]

Great 👍 x

[Sara_A]

As far as I am aware, recently the gp surgeries (well the pharmacist there) have been the ones contacting patients to ensure they are carrying steroid cards. But I'm not sure if all surgeries have an in house pharmacist?? That's how I have had my latest one issued anyway, the previous 2 I had from my rheumatologists, I've been on steroids for about 13 yrs now I think 🤔 scary really! I'm 43 years old and have osteopenia on last dexa scan. My rheumatologist says that I'll probably never get off of them! I'm on 10mgs daily maintenance but up to 25/30mgs when joints flare which is usually every 2 or 3 months, by the time I've weaned down I'm going back up!

Hate them as I just know when they go up I just want to eat everything in sight, I've put about 5 stone on in the last 10 yrs and I hate the way I now look because of it and often think of just trying to get right down to 5mgs a day and seeing what happens (not that I can get past 10 without a lot of joint pain or needing my hips injecting!)