emergency steroid card: Just been... - Asthma UK communi...

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emergency steroid card

bandido2
bandido2

Just been issued with one of these cards, went to the website it mentioned and am now living in fear of sudden collapse. Was sent away with a flea in the ear by my doctor who simply dismissed my fear and instructed me to continue with fostair and cease use of beconase which was prescribed for life by my ENT surgeon. Anyone else bothered by this new advice on the card?

30 Replies
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I think the cards are to show in the event of needing medical treatment, so the medical personnel know that you're on steroids so they can ensure appropriate treatment. Other than that they don't really change anything. In other words it's to help medics treat you to prevent problems, rather than telling you now you're going to have these problems.

I am not bothered as I lived with having one for two years. I take fostair nexthaler 200/6 2 puffs twice a day and dymista 1 spray in each nostril twice a day.

All my immediate family know if I in an accident or emergency operation the doctors need to know. I keep my card in my purse.

EmmaF91
EmmaF91Community Ambassador

Like twinkly29 said it’s really nothing to worry about. It is just a sign post to medics that you may need iv steroids if you are unconscious for some reason for a few days (but not necessarily). It doesn’t make a different to you in every day life. Having had one for years now, it’s never been used. And usually there’s no adrenal issue in people who stop their inhaler for a few days, usually hospitals are more worried if you’re on long term oral steroids.

Stopping meds under direction is fine, but if you fine the original reason for the nasal spray starts up again then contact your GP again.

I hope this helps

bandido2
bandido2 in reply to EmmaF91

Thanks for your reply Emma. Though I wouldn't want to wait and see if the warts burnt from my nasal passages twenty years ago came back, due to giving up the beconase, which is the medication my surgeon put me on. Frankly I am more worried about the fostair, which was prescribed by my asthma nurse who didn't approve of my forty years of ventolin (salbutamol) use. Which, never gave any problems. Now I seem to be dependent on a drug which could bump me off if use was ceased!

Poobah
Poobah in reply to bandido2

I used Beconase to sort out my nasal polyps for quite a while and now only use it if I need to as I have a tendancy to stay stuffed up even after a cold or allergic reaction. I still have my Beconase on prescription but will buy one if necessary, when I suddenly need it and the one I have has gone over its efficacy date. If you do start to develop nasal problems again then I'm sure your GP will prescribe it for you as nasal problems can exacerbate asthma.

BTW I've never had a steroid card. Something to ask my asthma nurse next time I see her. I'm glad you brought it up.

bandido2
bandido2 in reply to Poobah

When you get the card and read it thoroughly, then read the info. on the site it sends you to, you will probably see what put the wind up me. I am pretty annoyed at the fact my practise nurse didn't tell me any of this data when blithely prescribing fostair and will be taking it further (when I can actually get through to my surgery).

I was content on forty years use of ventolin and considered my 74 year old lungs to be up to cycling and brisk walking So my puzzlement is; why did salbutamol become a baddie that only steroids could save us wheezers from ? And what is wrong with it's use ? By the way, thanks for everyone's interest.

Poobah
Poobah in reply to bandido2

Re Ventolin - I had a heated exchange last year with one of the consultants on the respiratory team as she told me that Ventolin was not necessary and I was to stop using it. She was adamant that Ventolin no longer was part of the treatment of asthma globally. In the end she said I could still have it but I was to try not using it for 6 months and instead use Symbicort as a reliever on top of the regular dosage. I did as she asked and tried that for 6 months only for my asthma to flare up the more I used Symbicort. My asthma nurse switched me to Fostair and agreed that I take Ventolin between doses whenever necessary. But again, no more than 3 doses a week.

I'm afraid I'm a disappointment to my asthma nurse as I take Ventolin most days. Fostair is definitely better for me than Symbicort but I've never reacted well to the long act bronchodilator part of these types of inhaler despite the steroid element.

I understand the thinking that a good treatment plan should keep asthma symptoms at bay and that using Ventolin more than 3 times a week is an indication that the treatment plan needs adjusting. Unfortunately, my lungs just won't get with the programme. 😉

ninelives
ninelives in reply to Poobah

I had a mental picture of your lungs carefully scrutinising the latest advice , and saying nope we don't like that!

Had same issue so please note am not being flippant !

Poobah
Poobah in reply to ninelives

😂😂 my lungs definitely have their own agenda!

bandido2
bandido2 in reply to Poobah

Some lovely people on here giving comforting advice regarding inhaled steroids. I take that advice on board and accept that the card is only a precaution. But, without the steroids, no back-covering cards would be necessary. Presumably, severe asthma conditions call for these remedies and they may well be a life-saver for many folk. However, I go back to my question about salbutamol (ventolin), Just what is wrong with it? If it is considered to be dangerous, where is the emergency card for that? It certainly can't be considered ineffective. It was a huge step forward from the original, heart-pumping isoprenaline ones, and, I can confidently assert, ventolin changed my life.

It is worth noting, I come from a generation who had ephedrine as the main "remedy" for asthma. Useless. Followed by the "new"anti-histamine tablets. Just as hopeless. Then, like magic, in the fifties, an isoprenaline inhaler stopped my asthma in it's tracks. Later, ventolin took the jitters away. Since when, I've been happy as a sandboy, until steroids reared their head and practice nurses took over from GPs in asthma control. I wonder. Could there be a link to the limited budget of a practice ? It's often useful to "follow the money"

Thanks Poobah. You sound just as bolshie as me. (It's probably the steroids. lol)

EmmaF91
EmmaF91Community Ambassador in reply to bandido2

Hi

The reason they no longer like over reliance on salbutamol is because it’s a masking drug. This means people feel bad, take it, feel better, feel bad, take it etc etc, and never seek help. This cycle becomes very dangerous and has been shown to increase risk of a fatal asthma attack. It does not treat the underlying issue, only calms the symptoms. Currently, asthma is classed as uncontrolled if you’re regularly requiring 3+ doses of salbutamol a week (ie 6 blue puffs total) as it shows that whatever is triggering your asthma is not calming.

The preventer inhaler literally does what it says on the tin - prevents the need for salbutamol, and stops symptoms. Under treatment ie not reporting/treating increased salb usage is one of the biggest factors of fatality - I think the majority of UK asthma deaths could be prevented by increased preventive meds, or by better asthma education to patients/doctors. Now this is been found, there’s been a bigger drive in recent years to get patients controlled not via salb, but via other meds that treat the disease, not the symptoms.

Fostair has both a steroid base, to help calm the inflammation in your lungs, and a long acting reliever, to help treat symptoms potentially before they actually occur, thus hopefully negating the need for salbutamol all together, which is only a short acting reliever!

Hope this explains why they switched and gave you the preventer.

Hi EmmaF91, my consultant has me on a totally ‘off piste’, unlicensed regime, whereby I start my day with two puffs of Ventolin straight - via a spacer, immediately followed by two singular puffs of Fostair 200/6 via the spacer, followed immediately by two pulls of Spiriva...then two Carbocisteine capsules and one Omeprazole capsule. Throughout the day, I use Fostair 200/6 as my reliever...if things are really troublesome, I can try using a puff of Ventolin before the Fostair. (Obviously if, I’m really struggling badly it’s a trip to A&E). The evening regime is two puffs of Ventolin straight - via a spacer, immediately followed by two singular puffs of Fostair 200/6 via the spacer, with two Carbocisteine capsules and Montelukast at bedtime (along with hypertension meds)....before I try to settle down for the night, I often take a puff on the Fostair 200/6 to help me to stop coughing. I’ve had a ‘blue’ steroid card ever since I was diagnosed with severe, late onset asthma last year (during an emergency visit to the hospital).

bandido2
bandido2 in reply to EmmaF91

Cheers Emma. The most cogent elucidation I've had so far. Want a job as my asthma nurse ? Seriously, I WILL continue with this fostair gadget, much against my inclination to run a mile from more steroid use. Actually, I probably have no choice, seeing as this is a global trend in asthma care. I DO wish though, that there was not a certain arrogance on the part of prescribers, holding an "I know best" attitude. I still think that money plays some part though. Looking at some stats. one ventolin device a month for every asthma sufferer in England (not Britain as a whole, just England) comes in at about forty million quid a month.

That's a lot of wheezing ! Stay Safe everyone. Breathe easy.

Lysistrata
LysistrataCommunity Ambassador in reply to bandido2

I won't repeat what Emma has already said, but using inhaled steroids for asthma is fairly well established, has been going on for a while and does have a good evidence base. It gets less clear once you get into higher doses (eg keep increasing steroids or try something else?), and certainly there is room for improvement in asthma care in some areas. However, for most asthmatics, it is shown to be effective without incurring steroid side effects associated with higher doses and does save lives. Even if we changed nothing else, getting more people with asthma to take their preventers regularly, with correct technique, and use a spacer would save lives.

When relievers were introduced but used on their own (like the isoprenaline one you mention) there was an epidemic of asthma deaths. Although part of that may be due to those specific drugs, more recent research has confirmed that using beta-agonistt (relievers) regularly (long- or short-acting) without preventers is not a good idea and is associated with mortality; as Emma says, you aren't actually tackling the underlying inflammation if you just take the reliever. It doesn't mean the inhaler itself is somehow dangerous, though it's often not explained properly to people with asthma why excessive use of reliever is a bad sign (ie signifies poor control) and I've seen a few people worry that taking more than x puffs is like an overdose. (I've had plenty of nebs in my time and I'm still here - they tend to actually bring my heart rate down because they help the asthma).

I agree that there can be arrogance among medical professionals, and some do go too far. I fdefinitely think the consultant Poobah mentioned takes it way too far - I have no idea what they were on about saying salbutamol isn't used for asthma! Obviously, it has its place. And trying to insist someone just not use it more than 3x a week is also silly; that's the ideal for control, but you can't just force control or pretend it's there by telling someone not to take their reliever more than x times.

In terms of money: the salbutamol inhalers are cheaper than probably most steroid inhalers, even off patent, and certainly cheaper than the combination ICS/LABA inhalers. It doesn't make much sense to me that inhaled steroids would be prescribed to save money on salbutamol. I suppose there may be less cost from salbutamol inhalers being used once you're on an effective ICS dose, but I can't imagine it's very much compared to the cost of the steroids - so steroid prescribing seems unlikely to be some kind of big drive to save money.

twinkly29
twinkly29 in reply to bandido2

Emma should be an honorary asthma nurse! She's fab!

I recently was put onto Fostair and was given the same card. I was a bit concerned. I laminated it so it would survive in my wallet.

Think it’s more designed to inform medics if you are ill. I think I remember places like my dentist asking if I was taking steroids.

I wasn’t even given one when I was given steroids for inflammatory arthritis, I had to ask for one then prove to the chemist ( different branch to the one who dispensed my steroids) that I actually had steroids before I was given the card.

To be honest I would just keep it up to date and put it in your purse or wallet and more or less forget about it.

I’ve been on symbicort for 12 years and never given a card, I didn’t even know this was a thing! Can we download it?

Jjade
Jjade in reply to Kezzarbell

Same! I didn't even know it was a thing!

Biggie_McDick
Biggie_McDick in reply to Jjade

I have had one for years.

I would be interested in seeing a link to the website if the OP cares to share it

Js706
Js706 in reply to Biggie_McDick

There isn’t a specific website that they’re available on.

If you’re interested this link has a table with inhaler doses that steroid cards are recommended for and the last page has some patient info on.

panmerseyapc.nhs.uk/media/1...

But again they’re only “recommended” for the high dose ICS, it’s not an absolute requirement and stopping ICS suddenly is much more likely to cause a problem with asthma than from an adrenal gland point of view (which is what the cards are for)

Been on asthma steroid medication as long as I can remember and never been given a card? Is it age related?

For people who are concerned it depends on the dose of steroids you’re on.

If you’re on oral steroids for longer than 3 weeks at any dose you should theoretically have a steroid card (although this doesn’t always happen!) and as others have said it’s just to let medics know you’re on them in an emergency situation where you can’t tell them yourself as stopping them suddenly can be dangerous - so it just makes sure they prescribe them.

The risk of problems with suddenly stopping steroid inhalers is much, much lower and very few people will have any problems (I’m pretty sure it’s more of a theoretical risk) and so it’s only part of recommendations to give a steroid card for the highest dose steroid inhalers.

I've had the card for the last couple of years, am also on fostair and regularly have periods of being on prednisolone (steroid tablets) and I'm still fine so please don't worry. X

Many people should probably have had them for years - like js706 says anyone on them for 3 weeks or more should have had one for years - but haven't suffered as a result. And lots of people are on steroid inhalers which are sometimes stopped when asthma is controlled (as part of the step up step down process) and they're fine. I've have various steroid cards for various inhalers/pred and to be honest they're annoying and just get in the way.

Given it is to be kept, say, in your wallet and about your person, I view the card As a useful way for medics to be alerted to the fact that I am using steroids and at what dose, should I be unable to tell them myself.

That way they will be alerted to your need for steroids for a respiratory problem, and not suddenly stop them as that could lead to further problems, or to overload you with extra steroid treatments unknowingly, before your full medical history is known.

I don’t view it as something sinister.

Bless you was issued a steroid card 17 years ago-never had to use it.

Great replies on here which I hope ease your mind.

The new red NHS steroid emergency card is definitely something you shouldn’t worry about, as this has been developed by the Society for Endocrinology (SfE), Royal College of Physicians (RCP) and NHS England and NHS Improvement (NHSE&I), to raise awareness mainly for those of us who either have primary (Addison’s) or secondary adrenal insufficiency, that we are physically dependent on replacement daily steroid therapy as a critical medicine - without it we’re at risk of a life threatening adrenal crisis and we also carry an emergency hydrocortisone injection.

Patients who aren’t on daily steroid replacement therapy, but have a history of steroid usage may also require emergency treatment, so again the card raises awareness. Your GP or pharmacist is responsible for ensuring you have a card if needed, if for example you take regular courses of prednisolone or high doses of daily inhaled steroids.

The card is much better than the previous blue one, as it includes sections for you to complete your personal info/emergency contact and has a weblink and QR code printed on the card that takes you and health teams straight to the Society for Endocrinology Adrenal Crisis page which has all the relevant guidance on how to manage an adrenal crisis, and patient information links. New medical guidance has been released alongside the card, providing vital information on the prevention and emergency management of adrenal insufficiency, as well as a National Patient Safety Alert.

Here’s where you can download the card

endocrinology.org/media/370...

Claire_AUK
Claire_AUKAdministrator

Hi bandido2, sorry to hear of your recent concerns about your asthma treatment plan. It looks like EmmaF91 has given you some great advice here, you are also very welcome to ring one of us nurses on the AUK helpline and chat things through if you would like to 0300 2225800 930-445 M-F. You might also find this from our website useful asthma.org.uk/advice/inhale...

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