Really random question, I know, but no one has explained this to me for about 20 years!!
In the past year (and even in the past week!), we've heard lots about severe, moderate and mild asthma. When I was a kid, I was always told my asthma was severe but no one has ever had this conversation with me since!
Does anyone else find themselves in the same position? Is there a way to tell based on medication? Or is it just a case of asking the right question to get an answer?!
Thanks in advance!!
brit-thoracic.org.uk/docume...
Page 12 (or 14/28 😅)
Severity diagnosis kind comes down to a mix of what drugs you take, and how symptomatic you are, and people aren’t really told until they are officially severe. Typically a ‘mild’ asthmatic is well controlled on a low dose steroid inhaler and nothing else. Controlled Witham stronger dose and up to 2-3 of add ons would usually be considered moderate, whilst severe is usually classed as with uncontrolled on max ‘normal’ medications (ie lots of pred courses/hosp trips despite everything GP/local can give) or controlled on biologics/MABs or long term steroids. The majority of severe patients are under tertiary care (or waiting for it) and if they aren’t they should be. There is a severe asthma registry also to differentiate between severe and difficult in the uk (cause difficult is also a diagnosis - is spoken about further down that document 😅)
Usually if you’re severe you know it, but there are some in the moderate group that are unaware that they should ask for further referral. This is why there’s all the focus on ‘seek help if vent x3+/ week regularly or escalate maintenance meds if you keep requiring steroids (ie 2+ steroid courses every year for a few years in a row etc)
Hope this helps clear it up a little 😅
Thanks! That's a really helpful read and I managed to find where I sit on the chart! Before the pandemic (oh, those happy days!) I was going to ask my asthma nurse about this but now it doesn't seem like the right time to address a curiosity, so I really appreciate the time you've taken to answer.My dr has told me in the past that he would expect me to have 2 emergency courses of pred a year. I just assumed that was pretty normal but now you've got me thinking!
I have just managed to get my first 12 months (in the past 11 years) completely pred-free though as social distancing has meant no colds or flu!
Thanks again for the reply!
Porthos06 I think Emma has said everything I would say. It’s not surprising you are confused. Descriptions of asthma have changed even over the past few years and there is much more good research which has led to redefinition a of subtypes- genotypes and phenotypes- which explain what drives each asthma type.
For example, my severe asthma is eosinophilic type which means it’s too many eosinophils ( inflammatory immune cells) which are causing the inflammation. Some people have allergy driven asthma of have excess neutrophils (another type of immune cell which causes inflammation).
I have a diagnosis of severe eosinophilia asthma and I’m on max doses of all available meds-
Combi inhaler, montelukast, antihistamine, oral steroids ( continual for three years after big flare ups which meant hospital stay).
Now I am on one of the new biological monoclonal antibody injections. This has meant I could wean off the oral steroids.
Even so, my asthma is not completely under control and I need oral steroids form time to time. I attend the Severe Asthma Service in Wythenshawe, my local teaching hospital.
Hope this gives you a better picture of things.
I think your GP need to keep a close eye on your asthma and certainly needing more than a couple of rounds of oral steroids per annum needs to be something to watch.
Asthma can deteriorate over time so be aware of that, and this can happen after years of stability.
Take care xx
Thank you so much for your response - I'm starting to get a bit clearer on the whole thing now.I do think there's a danger of children being diagnosed and so all the detail and information is given to the parents. When the child then grows up, they don't have any of the information on their diagnosis etc... Actually, I'm not even sure how much info my parents were given - more just "here's your asthmatic child back, now get rid of your cat" 😂😂
I have no idea what kind of asthma I have - your examples have shown how little I know about a condition I've lived with for 28 years (in a good, now-I-want-to-know-more-about-myself way!)
Thanks again for the reply!
You’ve also got to remember that asthma changes over time. Often kids who have it badly can grow up to have it really mild. Some people don’t have it at all and then BAM are really bad in their 50s. I had mild ‘exercise induced’ asthma as a teen, but 10 years after my first puff of ventolin I’m a severe uncontrolled asthmatic. Asthma isn’t necessarily a progressive disease, even as adults it can regress, which is why people can get their meds downgraded.
The lack of info is across the board, adults as well as kids 😅. I was 15 told I was asthmatic and to take pump pre-exercise, but that was all. I had my first asthma attack at 19, and it literally took over a month to be diagnosed as I was never taught what to look for or when to seek help (I didn’t have an asthma plan or PFM until I was 23 and landed overnight in hospital so got an AN review).
Tbh the driver/phenotype of your asthma doesn’t really matter unless you’re uncontrolled/severe. The main thing it’s used for is eligibility for biological injections. Everything else is common sense. So allergic (IgE driven) tend to be triggered by allergies - avoid it (ie remove cat if there is a cat allergy) and things calm, non-eos/allergic tend to not respond to pred which often they can feel is the case (so getting that one diagnosed can be useful as it avoids potential long term pred side effects), but for all drivers it’s; identify trigger, remove trigger, asthma stabilises. 😅
EmmaF91 that’s an excellent and comprehensive answer. 👍
I’m classified as severe unfortunately and have been shielding, it’s been tough .. I think a lot depends on how controlled your asthma is and what sort of medication you need to do so , my asthma isn’t controlled at all despite being on nearly ten different medications at max dosages ,including long term steroids continuously for 5 years , and biological treatments , with monthly trips to the royal brompton in London ,
if your severe , you will know about it that’s for sure ....
Thanks for another reply! I'm really pleased to be able to keep developing my understanding of this.Would you say that severe asthma is essentially uncontrolled asthma then?
My asthma is very well-controlled on just my seretide (I was prescribed Montelukast as well but had to get taken off it because of side effects), providing I avoid my triggers. Obviously, avoiding triggers isn't always possible and sadly has led me to avoid exercise until earlier this year when I started the C25K program (now Week 6 - wahey! - but taking *a lot* of my reliever inhaler to get through it).
Thanks again for your answer!
Severe asthma is uncontrolled asthma despite max conventional therapy available. Uncontrolled by itself would be classed as ‘difficult’ as there is add on meds the individual could try. Any asthmatic can be classed as uncontrolled, until they find the right sort of med regime. Even a mild asthmatic, on 100 qvar can be uncontrolled, but being uncontrolled like that doesn’t mean it’s severe asthma, it means you need your maintenance meds escalated. Basically severe is uncontrolled with no escalation available unless you use maintenance steroids or mabs
There’s more about severe asthma here; asthma.org.uk/advice/severe...
Essentially. I think it can be yes .. before I was on long term prednisone and biological therapy... I had continuous symptoms of wheeze and shortness of breath 24hrs a day,seven days a week and could use my ventalin up to 20 times a day with little or no affect ... very scary indeed .. my asthma is sometime referred to as refractory or unresponsive to conventional medications ...
Jumping on: uncontrolled isn't the same as severe as Emma has said. You can be poorly controlled for a number of reasons, including: you don't have any preventer meds at all, your current preventer meds don't work for you and you need more/different ones, you don't always/ever take your meds, you take them but your inhaler technique isn't optimised so they aren't working as well as they should, you live or work in an environment that is constantly triggering you (eg with smokers, mould, triggers in your job etc).
Severe asthma is when your medications* are maxed out, you take your meds as prescribed, your inhaler technique is good, your triggers are as controlled or absent as possible (ie you don't live in a house of chainsmokers anymore) and any comorbidities or alternative diagnoses are ruled out, resolved and/or controlled BUT you're still uncontrolled, or would be if your meds were reduced. Uncontrolled is usually defined as having attacks that need oral steroids (pred) more than twice a year, or needing your reliever more than 2-3 times a week. So when you say above My dr has told me in the past that he would expect me to have 2 emergency courses of pred a year - nope, that's not actually normal and shouldn't be expected for most asthmatics, unless he was trying to say rather unclearly that more than that makes you severe.
There is UK-based research suggesting that both doctors and patients tend to overestimate the level of control, so it's possible that both doctor and patient can think everything is fine when it is not.
I do agree with your point about not knowing what to do with your asthma as an adult. I think patient education can be a bit hit and miss: I have seen people on here who have never been told how and when to use their reliever, or are not on a preventer, are very symptomatic but have never been told they need a preventer. I had mild and well managed childhood asthma but was completely clueless until I found post swine flu that I had not actually grown out of asthma, and now have atypical severe asthma. Steep learning curve *not* helped by some bad advice along the way.
If you're generally well controlled on Seretide that's good, but you may want to ask your GP/asthma nurse about how to improve things around exercise if you're needing loads of blue to get through that. Or even the AUK nurses - 0300 2225800 M-F 9-5 or WhatsApp - 07378 606728.
*medications in this case means high dose inhaled steroid, plus long-acting reliever (LABA), plus at least one more controller medication such as montelukast or tiotropium (Spiriva) or pred for more than half the year
Thanks for such a comprehensive response!I do feel having talked this through on here that I need to make an appointment with my asthma nurse but I'm just not sure that now (while the surgery is flat-out trying to do vaccinations) is a good time to arrange what is basically just a chat!
My dr isn't the most easy person to speak to and so you could well be right about what he was trying to say! My asthma nurse is lovely but her default position is reassurance rather than explaining things.
Thank you again for getting back 🙂
Welcome! It took me ages to learn all this...so I like to pass on what I know to hopefully make it easier for others.
If you're after a chat I do recommend the AUK nurses as an initial port of call (number in my post above). They have more time and tbh more expertise in this area! GPs and asthma nurses in surgeries can vary massively: some are great, some have no idea, and some asthma nurses were just given the job with no real training.
AUK nurses can talk it all through fully and give you some focused ideas to take to the GP/asthma nurse 'Asthma UK says x and advised me to ask about y'. AUK are keen for everyone to still get the care they need during the pandemic, but even without COVID it can be difficult to get the time and expertise to discuss more than the basics.
btw I have severe asthma and am under a tertiary centre and the nurse I usually see absolutely loves to reassure, but is not actually much help. She's meant to be a specialist nurse but she's usually more like a rather average GP nurse who did some e-learning but doesn't listen - hot on checking inhaler technique and asking me the same questions every time, less good on reading notes or providing any tailored advice. I usually end up feeling like I want to explain to her how it works ('no it does not mean anything that my eosinophils are normal, they are always normal, I don't have eosinophilic asthma. No, I don't have a wheeze, I never do, yes it is possible in asthma [I think, why am I explaining the guidelines to them?])
Agree with all of this, and they do not make the guidelines easy to interpret! For example a wheeze must be present to diagnose asthma but you don't have to have a wheeze in an acute asthma exacerbation..
This is where you get confusing and varying information as each dr/AN will have their own interpretation! Completely agree AUK should be the first port of call.
Even having had asthma as long as I have, I still have to rink AUK for reassurance after being given the wrong advice😂
Thanks so much for asking this- I had I no idea either!!
For me it was a surprise to discover that my asthma is ‘severe’ & poorly controlled, simply because it’s normal to me. When I’m well I take my meds & do pretty much whatever I want- with my check ups, when I’m ill I really, really am. It can change overnight but always has done.
So when I got the shielding letters they crushed me a bit & made me quite anxious- I suddenly wondered if I was more ill than I previously realised.
Agree totally that it would be useful to have severity properly explained to asthmatics- & educate the wider community too. I’ve had a lot of “but you look well”, “but you’re still able to run” etc.
Agreed - and some medics need reminding too! Even my specialist team seems unable to grasp I can be very up and down when struggling. They keep telling me they can do a test and tell me whether the problem is asthma, and don't seem to understand that I can be fine when they do it or even ok in bed post neb in hospital, but not fine at other times(or even walking to bathroom). Then they do a spirometry right at the end of an admission when I've had treatment and am feeling great, and say 'no evidence of obstruction during acute admissions'.
Can also be a problem with diagnosis - get spirometry booked but it's at a time you're ok so looks fine (without even getting into how some people are not at the average level to start with on things like spirometry and peak flow).
I think even people who 'know' asthma is variable seem to forget or not register what that can look like in reality. It isn't 'COPD for young non-smokers'!
My advice... don't get stuck on a label.... you have asthma and it responds or doesn't respond to treatment (these are often classified as severe as they need lots of medication and still aren't satisfactorily controlled)
There are different types of asthma, different severities.... when I was a kid a doctor told me " coughing isn't a symptom of asthma maybe it should be but it isnt" now there is a type of asthma called Cough variant asthma (main symptom is coughing)
But treatments are broadly the same ..... unless your severe and the specialists need to think outside the box
Generally...
Mild needs ventolin occasionally
Moderate needs a preventer to stay controlled and may need an add on therapy or 2
Severe needs lots of medication and still doesn't get satisfactory control (usually permanent steroids, montelukast and others) ... and all "normal" treatments have failed
Thats my understanding of it all anyway
Chip
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