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Questions about severe asthma

Hannah125
Hannah125
5 Replies

Hi!

I decided to write this post because I still don't really understand how the diagnosis of severe or brittle asthma is made. My whole life I only had very mild asthma but a viral infection made my asthma worse (there are a few posts about this) and all of a sudden I started having symptoms everyday and night almost continuously. I'm still struggling and I'm worried that I now have severe permanent asthma. However, I read that when you have severe asthma, it is supposed to show with spirometry. I've had several breathing tests done and they were all normal which led the doctors to believe that my asthma wasn't bad.

So, can you suffer from severe asthma and still have normal spirometry even during a flare up?

Also, as this is all new and scary to me, I would like to know if there are people here who struggle with severe asthma and how you deal with it ?

Right now when I read that people with asthma can live normal lives if they take their medications correctly I have a hard time believing it. There are so many people here who are taking all sorts of drugs from steroids to montelukast and even injections and yet they still end up in hospital and they are still struggling despite all this. I find that asthma is a condition that is often taken lightly. People think that you only have to use your inhaler when you can't breath and then everything becomes fine but sometimes it is not enough. I know that there are a lot of dreadful conditions that people suffer from but I really think that asthma is one of the worst conditions that exist.

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Js706

Severe asthma is normally defined as asthma that can’t be controlled with usual medications and other contributing factors (like reflux) have been ruled out and controlled as much as possible (https://www.asthma.org.uk/advice/severe-asthma/what-is-severe-asthma/). It should only be made by an asthma specialist, normally at a specialist asthma centre.

Brittle asthma is being phased out as a term really, but generally is used to mean a pattern of asthma that can lead to very sudden, severe attacks. (Again while the term is often used by a lot of people in healthcare it should only be diagnosed by a specialist)

Spirometry in asthma is always a bit difficult. When you’re well spirometry can be totally normal, even in severe asthma. If your “normal” level is better than predicted, spirometry also might not look too bad in a flare. But if you’re having symptoms there should be worsening if your spirometry too, either compared to your baseline spirometry when well or as your symptoms get worse. Or you might show more reversibility on spirometry when symptomatic. For example when I’m well my spirometry is brilliant, but as I get symptoms it starts to steadily drift down until it can be pretty rubbish.

You’ll find a fair few people on here with severe asthma :) the main thing is to get to know your asthma - what triggers it, what helps etc and make small changes at a time based on that. Also having a specialist you can work well with and making sure to try all the available meds!

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EmmaF91

As Js706 said severe asthma is usually only diagnosed by asthma specialists (although by this stage usually ‘normal’ consultants/GPs are banding about the word due to the number of hospital trips/admissions you have). And they do need to rule out mimic-ers/uncontrolled co-morbidities such as reflux, VCD, anxiety, PND/allergies etc (which is quite common to be missed at a more local level).

Brittle asthma is the ‘old-fashioned’ term for severe asthma and is slowly being phased out in the UK into more of a descriptive term of how attacks present (ie a brittle attack is one that comes on within minutes).

As someone with severe asthma and a super good spiro when well (144% is best so far 😅) I do know that as I become symptomatic it drops (60% lowest I think). If you find that yours is the same regardless of symptom level you may find looking into a mimic/co-morbidity just to rule them out. (I seem to remember in a prev post you mentioned breathing in was harder than out; with asthma it’s breathing out that is harder until it’s so acute that it’s both ways and requires hospital... just an idea to look at things like VCD which can be worse in than out initially and is often very confused with asthma, and often picked up after colds/infections etc and can often make the underlying mild asthma look/feel severe). Have you done any reversibility tests as even the most severe of asthmatics should show reversibility (and feel better for the meds etc)? Cause spiro by itself can be useless if you haven’t done one prior to being bad (ie one to compare too).

I am on injections now every 2 months, and since starting (touch wood) I have gone 3 months without emergency hospitalisation (the longest I have done in 3-4 years!!!). I am now living a ‘normal’ life (within reason) however do still have issues (just not enough to need hosp 😉).

Again I quite agree with Js706 learn about your personal triggers etc and find the right meds for you (cause we’re all different. Try and see a specialist to help you rule out/treat any mimics/co-morbities you may have which are irritating your airways if they are undiagnosed.

Good luck

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corinneyvonne

Hi Hannah Brittle Asthma was a term used to describe what is now known as Severe Asthma. You may also hear the term Refractory which also means Severe now. Severe Asthma is just complex in its diagnosis and treatment. There are different types of Asthma under the umbrella of Severe Asthma and one is Eosinophilic. This is the type that I have Severe Eosinophilic Asthma. Eosinophilia Asthma is complex to treat because usually the inflammation in the lungs is unrelated to allergies or allergic triggers. This was the hardest for me to come to terms with because I do not know categorically what started my Asthma. I personally think that it was vehicle emissions and I lived next to a busy main road for many months before it started. We now live in a less urbanised area and I am on biological therapy - Mepolizumab so I have returned to ‘normal’ (whatever this is 😂). I still take Montelukaast and Fostair as well.

Yes Severe Asthma is not taken seriously because some people do not understand what it is like to not be able to breathe. I cannot tell you how many people simply told me “just breathe” when I was having an exacerbation. It was infuriating. I even lost my job because of it. Anyway I am now on a treatment plan that is right for me. Remember you are unique and it may take the specialists time to find the right treatment for you. One size does not fit all 😄. Also stress is a main factor with me. If I become stressed my chest gets tight and sore and I start to worry that ‘it’ may be happening again so I get more stressed etc. etc. The trick is to find something that helps you unwind and come to terms with your life. I found Yoga which has been enormously helpful. I started with Yin Yoga which is mostly lying down postures and have now progressed to Hot Yoga. The first time I did Hot Yoga I thought I was going to die 😂 but I survived and nothing happened so now I go regularly. You really need to find something that takes you away from your Asthma even if it is just for an hour initially and once you realise everything is fine you will soar. My thoughts and prayers are with you 🤗

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millymumpkin

Hi Hannah

Please don't be scared! Lots of us have perfectly normal lives with asthma, even me with my severe version. There are many drugs available. And lots of support from others here too. Never let your asthma get dangerously out of hand - go to hospital immediately if you are struggling. The more inflammation in your lungs, the longer it takes for the attack to subside.

It is really important to find out what subtype or phenotype of asthma you have to be able to get treated properly. For example, I have severe eosinophilic asthma. Eosinophils are a type of white blood cell that for some reason go multiplying with my asthma & this shows up in my bloodtests with them being very high. You can also provide sputum sample - in my case, I also have eosinophils in that too. Get you doctor/specialist to identify what form of asthma you have & go from there.

Unfortunately, my type of asthma does not respond to any type inhaled corticosteroids (believe me I have tried every inhaler available) & I have to take prednisolone for the spring, summer & early autumn. I tried to stay on Symbicort, but the side effects were really awful - most people don't get these, I hasten to add, but I did. About 10% of us have this problem that inhalers don't prevent attacks at all. Montelukast gives me awful nightmares & insomnia & also has no effect at all. Antihistamines do nothing except make me go to sleep. We are moving house as my trigger is something very local. That will hopefully cure me. The specialists have not been able to isolate my trigger either, which is very frustrating as I have had one seems like a hundred tests!!!

There are many monoclonal antibody treatments available now, depending on your phenotype. You would need to be on a drip in hospital or clinic for these as you can go into anaphalactic shock. For now, that is the best option.

There is a trial drug called pevipirant that look promising for us uncontrolled asthmatics, also (in very early stages) an inhaler to suppress the ADAM33 gene which must be faulty with us. That sounds like a great hope for us all!

Do not get stressed about your ashtma - it is a balancing act on controlling your symptoms & avoiding your triggers - I have had it all my life in springtime, but never during the summer like I have since we moved here. I try to control my symptoms with the minimum dose of prednisolone where I have a normal life, but the lowest dose possible because of the side effects. I am very unusual - you may respond really well to other things. Don't think of ashtma as scary, think of it as a damn nuisance thing you will control & get back to feeling fine again. Beat the beast - never give in. But NEVER let yourself get too wheezy that you struggle. Hospital is the place to go.

Good luck. And please get a proper detailed diagnosis, please relevant tests for triggers - see a good, understanding, listening specialist. I would also keep yourself as well as you can - good diet, exercise & get your vitamin levels checked out too.

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Vee70
Vee70
in reply to millymumpkin

What a very informative post. I have my 1st spyro on Weds & will hopefully get some answers.

I have no idea, so look on here & read most posts....although it re-itterates the fact i’m clueless 😩

Stay well. Vx

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