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Steroids - Everything you need to know!

EmmaF91 profile image
EmmaF91Community Ambassador
6 Replies

Hi guys

A follow on from my ‘inhalers -what to take and when’ post ( healthunlocked.com/asthmauk... ) I thought I’d do a post about steroids today (as I build up to doing the other asthma drugs 😅). Hopefully this will help to alleviate some fears, and give some people some guidance regarding steroids in general! I will endeavour to avoid repeating myself as I know this is going to become a post of EPIC length 😅. So without further ado...

HOW THEY WORK

Steroids are classed as an anti inflammatory and basically treat the Th2-driven inflammation which is the cause of a lot of asthma issues. In a lot of asthmatics, both the large and small airways inflame, narrowing the tubes and making it harder for air to pass through, and steroids help calm that’s swelling. Not all asthma is inflammation driven however so not everyone responds to them.

INHALED CORTICOSTEROIDS (ICS)

I won’t go into these as I’ve covered them before, on the above post 😅. But in summary; generally safe and directs the steroid straight into your lungs.

STEROID NASAL SPRAYS

Another thing I plan to go into at a later point (will link when I have). Often prescribed for allergies or post nasal drip, they can carry the same potential side effects as inhalers etc, tho with the added ‘bonus’ of possible nose bleeds 😅

STEROID CREAM

Available both over the counter and on prescription (for stronger strengths). Usually for eczema or other skin reactions. Main side effect tends to be topical that is to say you’re more likely to get thin skin in the cream compared to a nasal spray etc. Won’t go much more into this as it’s more dermatology, not respiratory 😉😂

ACUTE ORAL STEROIDS

In the event of exacerbation or flare many people are given steroids as part of their asthma plan. They are usually commenced in the ‘yellow/amber’ zone of the plan, tho for some it may not be added until the ‘red’ zone. These means for either an increase in symptoms or a drop in PF (or both). Find out more about asthma action plans and where to print one off here; asthma.org.uk/advice/manage... If you are given prednisolone rescue packs to keep at home, please make sure you have advice/guidance as to when to start them, and make sure you inform your GP if you have!

In the UK, the steroid of choice is typically prednisolone, and the typical dose is 30-40mg for 5 days. That can swing between 3-7 days but typically it is 5 days as a starting dose. It can take a few days to feel like it’s kicking in for some people, but other people find it starts almost immediately. Long term side effects from the odd short course are rare, but if you regularly need short courses of course the potential increases. In the UK needing 2+ courses of steroids a year may indicate that your asthma is not fully controlled and that you may need an escalation of your maintenance meds (ie an add on).

ACUTE IV STEROIDS

If you’ve had to attend hospital with your asthma they may have given you IV hydrocortisone (paramedics may also give). This is typically now a slow injection of 100ml, however it can be a 200ml injection/drip bag (depends on how busy the dept is at the time 😉😅). This typically helps a lot of asthmatics a lot faster than oral steroids and they may see the improvement within the first hour or so (tho for some it may take up to a couple of days for them to really reap the benefits 😅), however many also comment that the boost lasts about 12-48hrs. If you’ve had IV steroids you’re usually then put onto a course of oral steroids to give the body a chance to ‘get over’ the attack.

Some people may have something called hydrocortisone therapy. This is typically give in ITU, if you are unable to take/keep down oral steroids or if that is not enough. In some cases it may be given on the resp ward (if you’re a severe asthmatic, and current treatment plan isn’t working, but you don’t need escalation to ITU). This may consist on a dose of hydrocortisone 1-3 times a day for a few days.

The most common short term side effect of IV happens if they give it too fast - a burning/tingling sensation in the nether regions 😉😅😂. It’s uncomfortable but does pass. You may also get hot flushes, tingling in hands/feet as well as the other short term side effects of steroids.

STEROID WEANS

If you are on steroids a lot (ie on/off short courses) or have a course that stretches for 3 weeks plus, then you will find that you’re told to do a steroid wean. This is to try and stop both steroid withdrawal issues, as well as adrenaline backlash a sudden stop may causes. Our bodies can be innately lazy, so by introducing a lot of steroids over a long period of time, it can reduce/stop us producing cortisol. Weans allow the body to realise it has to start pulling its weight again and starts the process of restarting production, thus avoiding the risk of an adrenal crisis that otherwise might not have happened. It also prolongs the treatment of your asthma if you are particularly unstable/have a prolonged trigger (like hay fever season), which should help reduce the number of flares you have and reduce possibly side effects of steroids (as the dose slowly reduces rather than you jumping on/off high dose steroids).

Typically a wean will be dropping 5-10mgs every 3-5 days, however people on maintenance steroids may be told to wean every 7 days and maybe even as low as 1mg at a time (yes. These can really drag on for some people! 😅). Something that’s not commonly told to people but is common sense; if you are symptomatic you should pause the wean 😉

STEROID WITHDRAWAL

This isn’t adrenal insufficiency as such, but it’s basically your body complaining about the lower dose of steroids. For some people this may present as an apparent worsening of asthma symptoms the day of/after the wean that then resolves, for others it may be mood changes, severe fatigue, weakness,body aches and joint pain, nausea, loss of appetite and lightheadedness.

This can be a sign that you are weaning your steroids too quickly, and may need to reduce at lower amounts; 5mg, 2.5mg or 1mg. If you get this and it doesn’t resolve in 24hrs you should pause the wean, or increase back to the level you didn’t get these symptoms and then speak to your team. Equally if you do get the issue but it resolves you should make sure to mention it to your team!

MAINTENANCE ORAL STEROIDS

Some people find that without oral steroids they lose control of their asthma. If this is the case, doctors should keep increasing maintenance meds until there is nothing more they can try. To do this the GP will usually refer to a secondary centre of care (your local hospital usually 😉). If you are on maintenance steroids and just under your GP then ask for a referral! If the local hospital can’t get you controlled/off of maintenance steroids then they should be referring you to a tertiary hospital who again has more options available to them!

The longer you are on steroids, the more likely you are to get the long term side effects. Because if this the aim of asthma care is to get you off of steroids or on the lowest amount they can. If you have been on maintenance steroids, it’s important that you wean when trying to stop the steroids. You also need to make sure you get your cortisol levels check once you’ve reached 5mg and not progress with the wean until that’s come back normal, or (if abnormal) you’ve had a synacthen test to check for adrenal insufficiency. This is also relevant for those on long weans, who are ‘unable’ to finish the wean or those who are constantly on/off high dose steroids (ie 5 days on, 2 days off, 5 days on etc etc for a few months). For more information about AI; healthunlocked.com/asthmauk...

MAINTENANCE IM STEROIDS

Some people may be put on to steroid injections. This is typically kenalog/triamcinolone acetonide. This may be because they don’t absorb oral steroids properly, or they are found to be non-compliant, or they require long term steroids but the side effects (typically mental health) from prednisolone are so extreme they are switched. This is an injection that is given in the hospital, usually once a month and usually in the butt 😉. Because this is a slow release drug it is difficult for the medics to know how much steroid you are receiving per day. They know kenalog 80 equates to maybe about 20mg/day but again they aren’t sure 😅. If you’re on IM steroids make sure your asthma action plan reflects this, as it’s likely to be different to if you are on maintenance pred. IM steroids carry the same side effects risks as prednisolone, however people commonly find they have less weight gain and a reduced effect on their mood when compared to pred, however may get more headaches and aches/pains etc.

SHORT TERM SIDE EFFECTS OF PREDNISOLONE (and other steroids)

Not everyone gets all of these. And equally you may not get them every time you take pred! I’ll just list them for ease, but it can be reassuring to know that they are side effects if you were unaware but got them 😉. Some of these may only appear on longer term steroids (ie more than 5 days), but don’t forget that you have been given prednisolone for a reason - breathing is quite important or so I’ve heard anyway 😉😂. Some of these are also a lot rarer than others! No doubt I have missed some of them but here you go;

Acne, mood swings/behaviour changes, depression, anxiety, elevated blood sugars, headaches, nausea, tremors, insomnia, brain fog, restlessness/akathisia, becoming more accident prone (ie waking into door frames 😉😅), easy bruising, increased appetite (or rarely reduced appetite), menstrual period changes, increased sweating/hair growth, infections, heartburn/indigestion, dizziness, slow healing/easy bruising, muscle cramps, low potassium, stomach aches/ulcers/GI bleeds, fluid retention.

Oh and a FOUL DISGUSTING taste 😂. But seriously, anyone on maintenance steroids I highly recommend asking for enteric-coated/gastro-resistant ‘red’ pred. There is some suggestion that it can be absorbed less effectively/efficiently, however if you’re one to get a lot of GI side effects, these ones have the benefit of tasting A LOT better 😅😂.

Speak to your GP or seek urgent medical care if you get:

Acute pancreatitis - nausea/vomiting, diarrhoea, indigestion/heartburn, jaundice, abdominal tenderness, tachycardia, fever. Go to A&E if you suspect this!

Cushings - too much cortisol. Moon face, buffalo hump, torso weight with thin extremities. Purple stretch marks, easy bruising, abnormal hair growth, fertility/libido issues, extremity weakness, mood swings and depression. This should resolve once you stop the steroids, however if you’re concerned speak or if it doesn’t to your GP and they can check your levels.

LONG TERM SIDE EFFECTS OF PREDNISOLONE (and other steroids)

Again not everyone will get these, and some of them people say they can ‘recover’ from once they’ve stopped the pred, but here are the side effects that may linger even after you’ve stopped pred.

Steroid induced diabetes - one of the hardest types to control and it can present as a mix of type 1 and type 2. Those on long term pred should keep an eye out for increased thirst/urination and get sugars tested if you are concerned.

Adrenal insufficiency - covered extensively above and in lysistratas post; healthunlocked.com/asthmauk...

Osteopenia/Osteoporosis - bone thinning. Again those on maintenance should keep an eye on this, maybe request a DEXA scan if you haven’t had already, as if nothing else it gives you a comparison point. This is why we often get adcal-D3/calcium/alendronic acid tablets, to help slow/prevent this from happening.

Glaucoma - increased eye pressures. Blurry vision, halos, headaches and eye pain/tenderness. If you’re concerned see your local optician and they can test for it.

Cataract- cloudy lens. Cloudy/blurry/dim vision, halos, glare, light sensitivity, poor night vision. Again any concern see an optician.

STEROID CARDS

To combat the risk of accidental steroid withdrawal, or adrenal crisis, those on moderate to high dose steroid inhalers (see what yours is classed as here; shropshireccg.nhs.uk/media/... ) or those on steroid weans/on/off steroids a lot/maintenance steroids are normally advised to carry a steroid card. Traditionally these have been a blue card that you could just get from your local pharmacy, but NHS England (and maybe everywhere in the UK 😅) are now moving to sending red steroid cards in the post. This is because a lot of people who should carry them are unaware that they even exist 😅. They are only really used if you turn up to hospital unconscious and thus unable to tell them what drugs you take.

STEROID ALLERGY

It is rare, like really rare, but you can be allergic to steroids (not just getting the normal side effects). By this I mean anaphylaxis or other signs of allergy; itching, swelling, hives etc etc. If you really are truly allergic to steroids you should definitely be referred to at least your local hospital for testing (if not to a tertiary centre).

FENO/NIOX TESTING

It’s all the rage at the moment as a ‘diagnostic’ tool for asthma. I dispute this 😅. It is a good tool to work out if steroids will benefit you, and if you need doses increased etc, but it doesn’t take into account the asthmatics who don’t have that inflammatory marker. Not every asthmatic benefits from steroids, however the majority do. This is a little machine which measures how much nitrous oxide you breathe out. If you guys want I can do a more in depth post about this in the future but basically it gives you a score and that tells them if steroids are indicated. It does not tell them how severe your asthma is, nor does it tell them if you have asthma, tho it may indicate how uncontrolled your asthma may be (for those who respond to steroids). But basically if an adult scores <25 (children under 12 <20), they are unlikely to response to a steroid change. If they score 25-50 (kids 20-35) they may respond to steroids and if they they score 50+ you’re highly likely to respond to steroids. Theoretically if you’re well controlled on a steroid inhaler you should score low.

THE WEIRDOS/UNICORNS (*cough* I mean non-allergic, non-eosinophilic asthmatics 😉)

As I’ve mentioned before, some asthmatics don’t respond to steroids. Our non-allergic, non-eosinophilic friends, typically aren’t Th2-driven. This means they can score low on FENO no matter how uncontrolled they are. It also means they won’t necessarily improve with oral steroids during flare. However bizarrely a lot find that they do benefit from ICS, as well as some finding a benefit from IV steroids during acute flares. Unfortunately as these types tend to be unresponsive to steroids they often end up having to over rely on salbutamol until they reach a point of needing emergency care when things start to kick off for them.

So there you have it guys. Everything you need to know about steroids 😉😅😂. And an epic essay at that. I must also highlight that no matter the side effects, the benefit of steroids is much greater than the risks (if they work for you). Don’t be scared to take them, they are designed to help you breathe. The risk of suddenly stopping that function and the consequences of that (as breathing is kinda an important function), is much greater than the potential risk of developing side effects. Steroids are given for a reason and doctors weigh up pros/cons whenever they prescribe them!

In other news, I have a plan to cover the other common (and not so common 😉) asthma add on meds. It may take a while, but watch this space! Also shout out to Lysistrata, Js706 and Twinkly29 for proof reading this and most of my other posts like it!

Look after yourselves everyone. Stay safe, stay awesome. Yeah

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EmmaF91
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6 Replies
figroll profile image
figroll

Wow! Thanks for all the work that went into this and your other info posts. So incredibly helpful. :)

EmmaF91 profile image
EmmaF91Community Ambassador in reply to figroll

You’re welcome. And other than the actual write up it wasn’t actually that much work 😅.

And I do admit a not-so-secret agenda to these posts... in the future I can just refer to them as/when other people ask! It saves having to constantly repeat the same replies to people 😅 (this is how this all got started 😂)

But I’m glad people are finding them helpful!

figroll profile image
figroll in reply to EmmaF91

Lol. Excellent planning!!

EmmaF91 profile image
EmmaF91Community Ambassador in reply to figroll

Work smart, not hard 😉😂😂

Mummynuthouse profile image
Mummynuthouse

Hi, am new to the community, have suffered from asthma for 24yrs, however over the last 5yrs it has become a lot worse, since March this year I have been admitted to hospital 5 times due to attacks. I am on nebs, managed steroids, both of which I have been on for over a year, plenty of inhalers and antihistamines, however, whilst I was a smoker my feno was happy sitting around the 70's now that I have stopped, for over a year, my feno has increased varies between 196-214 nobody has explained these numbers to me, I seem to be allergic to everything, which doesn't help.

EmmaF91 profile image
EmmaF91Community Ambassador in reply to Mummynuthouse

Welcome to the forum

Are you under a specialist/tertiary hospital? (I’m assuming you are under the local hospital). If you’re not I’d definitely ask for a referral as they have options like bios available to help with the underlying issues.

Congratulations on quitting - hopefully you feel better for it! Bizarrely smoking is known to reduce feno score 🤷‍♀️. However whilst smoking and not, both your set of scores indicate you are not well controlled.

As I said I’d definitely ask for that referral!

Hope this helps

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