I’m newly diagnosed (peak flow meter that I used and submitted data). Had my first asthma appointment over the phone yesterday.
I’m 29 and have never been diagnosed before now/ felt that I struggle to breathe. The only thing is when I run in the cold my throat completely closes up and I’m wheezing for about 30 minutes. Made it 28 year before I thought maybe a bronchodilator would help for exercise.
I’m otherwise fine. I have used ventolin prior to running as a kind of ‘kick that nonsense before it starts’ 4x a week - at that frequency, side effects seem unlikely based on the research.
The nurse kicked into USING RELIEVER OVER 3 TIMES A WEEK - ASTHMA UNCONTROLLED bot mode and put me on 2 x puffs of Fostair twice a day.
To me as someone who has never had a near fatal asthma attack, even when running hard in the cold, and otherwise breathes fine, this seems like chasing an insect with a rocket launcher.
As fellow ‘sufferers’ (I’ve never been seen face to face but I definitely go into ‘wheezy breathing mode’ after running in cold, and can’t get enough air in - ventolin solves that) what are your thoughts?
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Asthmatt382
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That sounds similar to my symptoms when I was originally diagnosed. I tried the steroid inhaler that was recommended and found it had a really positive impact on other areas of my life where I wasn't aware that asthma had any impact (slept better, no longer needed ventolin for exercise, improvements in breathing walking up hill and up stairs).
It might be worth giving it a try and seeing how you feel?
Sounds like you have exercise induced asthma. There is a test to diagnose this so that treatment can be minimal and targeted, such as taking a reliever inhaler before exercise.
Not sure why your asthma nurse has diagnosed uncontrolled asthma without testing you for exercise induced asthma. It may be that you would have to be referred to the hospital for the test. Each Area Trust will have a published guide for the testing and treatment of exercise induced asthma.
I agree that Fostair is not the best choice for you and your asthma. You will need to go back to the doctor and request the test for exercise induced asthma so that treatment can be minimal and targeted.
Current belief is that ‘exercise-induced’ asthma is actually ‘mild’ uncontrolled asthma. Exercise is a common trigger for asthmatics, and whilst the old diagnosis of EIA is usually now seen in more mild asthmatics, the idea is to prevent issues occurring with a preventer rather than relying solely on the reliever, as ANYONE can have a fatal attack (and often they are in people who have been ‘under treated’ with maintenance drugs).
And anyone requiring more than 3 reliever doses a week is classed as uncontrolled and so needs escalating, whatever the trigger may be.
When I was first diagnosed I was classed as EIA, but because I was training 5/6 days a week and long hours they put me on various preventers, until I wasn’t relying on ventolin, pre, during AND post exercise (long hours), basically every day 😅.
Hope that explains why they’ve added the preventer. The aim is to not need ventolin until it’s an emergency, rather than as maintenance treatment (which is how it used to be). Preventer I bakers are personal, what works for one, may not work for another, and just. Cause it does not work for you doesn’t mean it won’t work for someone else! If it helps one of the kids (well teens) I coached with ‘EIA’ was put into fostair and it was great for her... no more symptoms and no more salbutamol needed! It could be that once you’ve got good control they dial you back (less puffs/change of inhaler) and whilst admittedly they usually gradually build up strength if your AN was concerned they may have ‘jump started’ to a slightly stronger combined inhaler rather than ‘just’ a steroid inhaler
If you’re concerned or want to discuss it further The AUK helpline nurses are great and can be reached on 0300 2225800 M-F 9-5. Alternatively their WhatsApp service is 07378 606728.
I do know all that to be honest... it’s just hard for me because:
I don’t think that we should pretend here that long term ICS (which I might even be on board with if not combined with a LABA literally before I’ve even tried ICS alone) doesn’t bring about epigenetic and therefore histological changes to lung tissue. Plenty of studies in recent years have shown overall greater deterioration in lung function in elderly asthmatics who have been on long terM ICS vs no/intermittent ICS.
I guess I’m just a bit like... never even approached a attack in everyday life, and my attacks while exercising have been consistent and non-ER-necessitating for 29 years. Therefore, the balance in terms of managing what might be an exceptionally mild asthmatic case with ICS, which - as you probably know - will exacerbate asthma upon cessation, makes me uneasy.
I’ve had a bit of feedback here though that the Fostair is a bit like nought to sixty, which I’m grateful for because that’s what I wanted to know.
My nurse was a bit ‘I’ve spent a lifetime fighting non-compliance’ in her attitude from the get-go, so hopefully at our review she will listen to my concerns.
She also told me to start taking antihistamines routinely to reduce my inflammatory response in general... Again - if I was severe then I would want to reduce the disease progression and COPD risk etc. But considering I am generally unaffected!
Anyway - I rant. I suppose I’m annoyed because my autonomy has been taken away, and I’ve been given the option of a much harder option, rather than a SABA to use on occasion.
SABA alone to Fostair does seem like a bit of a jump. It is possible they wanted to try you on a MART regimen ie just the Fostair, but in that case they should have discussed that.
Can you point me towards the studies on lung function decline with ICS, and histological changes after ICS use? I'm not denying they exist or disagreeing without reading them, would just be interested to know (my job involves reading/interpreting a lot of scientific literature and I have been working on respiratory stuff lately).
My immediate thought would be to ask if they have controlled for asthma severity/exacerbation frequency, since more severe asthmatics would be more likely to be on long term vs intermittent ICS and that in itself can affect lung function, especially if they still weren't fully controlled despite ICS use - vs the mild/intermittent who may just be less at risk of decline to start with.
Leading on from that - saying that stopping ICS will exacerbate asthma on cessation, is there anything to support that it isn't just because someone needed ICS, they stopped it and then got worse because they didn't have it? I get that it could seem like the ICS made things worse if they didn't seem to need ICS before, took it then got worse when they stopped, but asthma can change a lot within the same person. I don't think that scenario is proof that taking then stopping the ICS made them worse. If you have any evidence to the contrary again please do share; I'm not dismissing it outright but would need to know more.
In the latest guidelines for asthma and COPD, they do have guidance for ICS use, as you may already know: ICS for COPD doesn't seem to have any benefit outside patients with increased blood eosinophils and frequent exacerbations, and may have some increased infection risk in patients without those features. For asthma, it seems like it still has some benefit in reducing exacerbations even in patients with low-normal blood eosinophils, so it's still recommended for first line preventer treatment (GINA guidelines don't want anyone to have SABA without steroid, which is probably what your nurse is basing it on). We have pretty terrible morbidity and mortality rates for asthma in the UK so I can understand the drive to try and get on top of that with the tools we already have.
The guidelines aren't perfect, but it does match up with the findings that a lot of people do have uncontrolled inflammation that they may not be aware of, and it does put them at risk of having a severe or even life-threatening attack even if they don't especially notice it day to day, or have got used to it. I do know this (ie discouraging intermittent SABA use) has been a much debated issue though.
The lung function vs exacerbation relationship does seem to be quite a complex one too - they don't necessarily seem to be that closely related much of the time (you can have ok lung function but be symptomatic and at high risk of exacerbations, or have decreased lung function but not have problems and have low risk of exacerbations, plus various different combinations of those factors). So there's likely going to be some tension between reducing risk of exacerbations vs some potential decline in lung function, if that has been demonstrated, and it may be a difficult balance.
Yes - I’m a biology graduate and I unfortunately misinterpreted a double negative (as above) on a few of the studies (as I’m sure you’re aware, good long term is lacking for many treatments for many disorders - I also self-administer NB-UVB for psoriasis and have had a miserable time trying to work our relative risk of skin cancer with regards to dosage there...).
Exacerbation (with regards to worsening asthma, generally - not the asthmatic term for an attack) upon cessation of ICS seems fairly well documented, it looks like (I’m in early days of personal reading for asthma having not given it much of a thought before now). Steroid withdrawal at the cellular and endocrine level is common across many disorders, but would likely be short term (but who knows??).
Yes. Balance is key here. However, I’m starting to get the feeling I’m simply halfway through an exotic cruise in de Nile
I think I’d be happier with the ISC at low dose (if appropriate) if the LABA gets dropped. I would understand the combination therapy as an ‘initial’ while the steroids take over.
I had a horrible time a few years ago with topical steroids for the psoriasis and HPA suppression which isn’t helping either.
Ah - I just saw your post saying that after I'd published mine! They're not always the best written (why use a double negative when they could have just stated it more clearly? I would get that edited at work and rightly so.)
It does make more sense that way round though ie prevents decline.
Regarding the worsening asthma on ICS - yes I agree it is well documented, but my impression was that it's due more to actually needing the ICS,and then not having it resulting in more inflammation and worsening control, rather than the act of stopping it. I'm not aware of a rebound effect in asthma, but I may have missed it.
Anecdotally, with oral steroids stopping them too soon and getting worse again seems to be due to the inflammation increasing again rather than due to stopping them suddenly. There are certainly endocrine consequences to stopping corticosteroids in some cases, especially after long term use and higher doses, but not sure if there's anything to show that the withdrawal itself affects asthma like it does the endocrine system (but there may be proof out there that I haven't seen).
If you have uncontrolled asthma (wheezing when exercising is one sign as are night time symptoms)
Fostair contains a long acting bronchodilator and should work pretty effectively and for a lot longer than ventolin which is also called "a rescue inhaler "..... sort of a get you out of trouble quickly
I was once told that uncontrolled asthma and allergies have a cumulative effect and you might not ever have a life threatening attack but one day you might just
Statistically *most*(there are always exceptions to the rule) .... will have a slow increase in symptoms that will mostly go unnoticed until they are severe enough that they are a real problem
When I lived the states, I was very active. However, exercise was a problem for me. Anything more than a brisk walk would make it difficult to breathe and I could not move air. If I was doing cardio then I would start to cough. My GP in the US recognised the problem, exercise induced asthma. He gave me Azamcort, Serevent, Ventolin and Singular.
However, when I moved to the UK my GP told me exercise induced asthma was non-existant and did not give me any asthma medication. A few years ago, I had chest x-ray that indicated asthma and I was started on asthma medicaiton. Due to the failure of my UK GP to get me on medication I suffered immensely and my asthma is not well controlled.
To make it worse, my asthma nurse is nurse ratchet. Who ignores my cardiac and asthma history to write her own narrative. From my perspective, asthma nurses in this country are not properly trained. Unlike US RN's UK nurses are not required to have a STEM background before applying to nursing school, they are not taught anatomy, physiology, biochemistry, pharmacology, and microbiology before doing their rotations. For me, I have to question, if the lack of science background is the reason why my asthma nurse goes off on her tangents. In the US my asthma was managed by a doctor who understood the issue. Instead of a nurse that has blinders on in regards to asthma.
I have had asthma since I was 11. I am now 48. Very mild or so I thought. I’ve been a fitness instructor for almost 20 years, able to teach up to 30 classes a week. Not really ever had a problem until about 3 years ago. First asthma attack, relentless asthma symptoms for months! Honestly felt like at least 6 months before I became ‘normal-ish’
So please don’t underestimate your symptoms. I understand you may not believe you need a preventer so maybe wait and give it a try and then when you can meet in person you can get more tests etc
It’s better to be safe than sorry. With asthma it’s very much about control. My symptoms became uncontrolled through various viruses that hit me and I just didn’t understand that this would be different from all the other times when I’d shaken it off.
Hope you get the answers you want.
Also taking an inhaler pre exercise is similar to taking a preventer anyway, yes? Same logic.
Thank you for all of your responses. They have really helped me to gauge the different experiences people can have of asthma.
I’m either in terrible denial or have obviously had either the condition or it’s severity misdiagnosed. I’m taking the fostair (I really resent the LABA - I didn’t need ventolin that often, I might even have been ok without taking it before every run). It’s fine so far. Obviously a bit less breathless climbing A massive hill this morning - I think I’m correct in thinking that both LABAs and SABAs improve lung function in non-asthmatics anyway.
I will take it and await a face to face review, but now that I’ve had time to mull over the advice the nurse gave to me I’ll be able to voice them with her and hopefully she won’t go into irritated / defensive mode.
Edit/addition:
I don’t see using the ventolin sporadically as the same as using a preventer. It’s short acting, and so my lungs are able to remain ‘normal’, or unaltered pharmaceutically for the vast majority of their time, therefore providing less opportunity to alter their phenotype to account for the drug. In almost every condition in which they’re indicated, corticosteroid use results in tolerance and therefore dependence. I just can’t bring myself, in the absence of good solid evidence to the contrary, to go down that road if I have no evidence so far of needing to, or ending up in that spiral of - it gets worse, dose increases, adverse effects contribute to increased risk of infection etc making it worse, dosage is further increased, lung health further deteriorates in a positive feedback loop and so on... I need to keep evaluating the research.
LABAs and SABAs shouldn't improve lung function or exercise performance in non-asthmatics and research has demonstrated this (it was looked into as they were concerned that athletes would use SABAs to improve their performance without an asthma diagnosis/start faking a diagnosis to access them).
And one of the things that helps diagnose asthma is reversibility in response to SABAs (so an increase in spirometry or peak flow after taking salbutamol). If they had a similar effect on non-asthmatics this wouldn't be a part of the diagnosis.
In regards to the tolerance to ICS you're worried about- I can't find any papers to suggest that it does happen, where have you read that it's an issue? And when looking into exercise induced asthma they say they no longer recommend extra doses of SABAs beforehand because relying on that can worsen the issue long term. Also inhaled ICS are generally preferred because they have a much lower risk of systemic side effects like risk of infection as their action is so localised and compared to oral steroids it's a tiny dose.
I don't know why they went for fostair rather than just an ICS and it may be that you don't need the LABA component long term - that's something to discuss with your GP or asthma nurse. As asthma is meant to have a step-up/down management plan - so the aim would normally be to try and reduce doses after a period of stability anyway.
Have you had any lung function tests or been taking a regular Peak Flow measurement? They can be helpful in telling you how your lungs are doing overall. This would give you an idea of what you need and when. You can buy a Peak Flow meter online for yourself.
I don't have exercise induced asthma but it is made worse by inhaled pollens and irritants. I started off on ventolin and clenil, then moved to to fostair. I was taking antihistamines too but because ofn an allergic reaction. I can't see they would help asthma unless you had an allergy? The doctor prescribed the fostair after I needed additional oral steroid. They do seem to go on preventive action in response to increased problems.
I self-measured peak flow readings (due to covid-19) over the course of a week and sent them in. The exercise response is quite bad and the inhaler has certainly helped breathing (not as much as a puff of ventolin, but longer term for sure). I have been taking 1 puff. I see no need to jump straight to 2, and I did a 10k yesterday without major drama (felt a tiny bit more puffy than when using ventolin).
She kind of said ‘oh, it’ll be tree pollen when you’re running because you’re mouth breathing’. I told her it’s worse in the cold and she said ‘That’ll be dust mites or winter allergies’ and I pointed out that it’s bad when it’s a cold morning in summer too, and then she just grumbled.
I’ve read several papers since on a proposed mechanism for exercise induced asthma which isn’t allergen related so I’m going to definitely not take antihistamines long term (I’m 29, for goodness sake).
I guess if I’d felt more confident in my nurses knowledge of the molecular basis for asthma I wouldn’t be quite so reluctant to follow her advice.
Wow, the guidelines are very different here in Canada. Here they say it’s bad if you’re using the blue inhaler >3x a week “excluding the daily dose to be taken prior to exercise”. We don’t have asthma nurses in Canada (that I’m aware of ... ). The Dr escalated my treatment based on the number of times I used ventolin for reasons other than exercise in a typical week. And I have never been told to stop using it before exercising, even if I’m on Alvesco + Montelukast! I feel very well controlled but I think I definitely need my inhaler before exercise, as sometimes (though very rarely) I also need it during or after. For me one of the main signs that I’m starting to lose control is when just the slightest laugh causes symptoms.
Hi! fellow Canadian here, you're right we don't have "asthma nurses" but we do have respiratory therapists which I think are fairly similar. I've been seeing one since I was 16 (so 4 years) and honestly they are so much more helpful than any general doctor or nurse practioner that I've ever dealt with. They actually truly understand asthma and the many different forms that it can take. When I have an appointment with them I know that every complaint I have will be taken seriously and that I will recieve the proper treatment that I need. You should ask your doctor if there are any in your area and if they can give you a referal, I promise you wont regret it.
For what it’s worth, I’m now feeling breathless and wheezy in my day to day life. Have a lingering irritated feeling in my throat and a fairly tight chest. No fever, malaise, did a COVID test which was negative...
If you start jumping up and down on a trampoline and your head falls off, having never fallen off before, it’s probably the trampoline right?
Thanks for your help. Just as an update I called the asthma nurses on the helpline who kind of agreed that Fostair was a bit nought to sixty and that the side effects I was having (chest pain like an infection and worsening of symptoms) were not ideal.
I spoke to my asthma nurse who sent me back to my doctor and I’m now on a mild dose of the preventer with optional reliever. I have to say the steroid is already changing my life. Didn’t realise quite how little I could breath and how breathless I was s before. I’m only about five days in but already I find myself speaking with ease and on my 10k run I wasnt breathless at all!
Thanks for all your advice and apologies for my hardcore denial. I’m very glad I tried again after my fostair disaster because the steroid alone is wonderful.
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