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Non-allergic asthma? Is montelukast and antihistamine needed?

LRLR profile image

Hi. I have asthma and have just received allergy testing results requested by my consultant which have been negative- so not shown any allergies at all to dust/ pollen etc. which I am shocked about as dust and pollen are my main triggers and I have been on nasal sprays for rhinitis which I assumed was caused by pollen. I often sneeze and caugh daily.

Can anyone please help me to understand what this then means? Does this blood work one hundred percent rule out allergic asthma and so therefore I have the ‘intrinsic asthma’ type? Can this type of asthma still be triggered by dust and pollen even though these are not actual allergies?

Also, does this mean that I could stop taking montelukast and fexofenadine if I do not have allergies? And instead be managed with stronger inhalers as opposed to ‘add-ons’ which maybe more for allergic-asthma?

Sorry for lots of questions! I am just very confused now the allergy asthma seems to be ruled out.

Thank you!

28 Replies

People can have have hayfever and asthma as separate entities, so although they get hayfever symptoms it's not necessarily triggering their asthma. Not entirely sure how that works though - but equally it seems the opposite to you actually. Maybe it's something else triggering you? Have they said it's definitely still asthma and if so what they think might be triggering it instead if allergies? I wouldn't stop any meds though without their say-so.

Inhalers aren't necessarily stronger or weaker - assuming you're on more than a basic brown inhaler anyway. They're just different drug combinations and the key is finding the right one for the each person. In cases where it's not asthma (or where the asthma element is controlled but something else is causing the breathing symptoms) no asthma inhalers or other asthma meds would help.

LRLR profile image
LRLR in reply to twinkly29

Hi twinkly.

Thanks for your reply.

Yes they have said it’s definitely still asthma, my peak flows show diurnal pattern and I have dramatic improvements after taking inhalers. They have not said anything else other than there is intrinsic asthma (non allergy) and extrinsic (allergy) and they did the test to see if I have extrinsic type.

I know my triggers have been; strong cooking smells, smoke, steam (when been in hot swimming pool) dust, pollen particularly when in forests/woodlands, candles in the home, some male deodorants. All of these things have made me breathless/tight chested and at times brought on severe asthma attacks which is eventually relived with lots of ventolin.

Is it that with intrinsic asthma anything can trigger your ‘general’ asthma as your lungs are just sensitive? Or should I not be triggered by these things if I have intrinsic? Could the blood test be wrong?

I am currently on Fostair 100 but not managed and feel tired all the time. I was managed well on fostair 200 but had lots of side effects on this so dropped down to see if I could manage with 100 and montelukast which unfortunately I’m not.

twinkly29 profile image
twinkly29 in reply to LRLR

Erm I don't know really. But being in woodland etc isn't necessarily pollen or allergy - it could dampness or other more general environmental factors - which might explain the pollen thing. maybe?!

Maybe it would be worth trying the Fostair 200 again and hoping the side effects go after a few weeks. Or ask about Qvar as an add-on to your current Fostair - that way you're increasing the steroid (and Qvar is the same one as Fostair has) but not increasing the LABA. Maybe it wouldn't be the answer but maybe worth asking about.

LRLR profile image
LRLR in reply to twinkly29

Oh thanks so much for that! I was wondering what steroid was in fostair so that’s really helpful to know. I will speak with my GP about it. 🙂

twinkly29 profile image
twinkly29 in reply to LRLR

Google it to check but pretty sure it's the same. Or look on the inhaler/box?

Hi LRLRI have asthma and hayfever and like you take antihistamine and Montelukast.

I had allergy testing at the respiratory clinic in my local hospital and was negative on the allergens they tested.

However, my antihistamine has been doubled. The consultant explained that my IgE was high, but they do not keep testing to find the culprits as that would take forever.

Maybe you are similar to me.

I would speak to someone before you stop. I didn’t and when the nurse rang with the results I stopped the antihistamine and my asthma got much worse very quickly.

Lysistrata profile image
LysistrataCommunity Ambassador

Hi,

So intrinsic vs extrinsic asthma is really quite an old and basic way of looking at things, from before a lot of the recent research was done, and I'm a bit surprised your consultant is still seeing it/framing it that way!

These days asthma is seen more in terms of allergic, eosinophilic, or non-eosinophilic asthma. This looks at what biological processes are driving the asthma (eosinophils are a type of white blood cell that has raised levels in certain types of asthma; they're associated with a type of airway inflammation). Knowing what the underlying processes are also shows what treatments are likely to help: allergic and eosinophilic asthma usually respond well to steroids (inhaled and oral), and there are also targeted treatments ('biologics') for severe allergic and eosinopholic asthma (such as Xolair (omalizumab) and Nucala (mepolizumab).

You can still have allergic or eosinophilic asthma which isn't severe and doesn't qualify for the biologics, but a lot of people find out what type they have when they've been referred for difficult to control asthma, so I'm quite surprised your consultant hasn't mentioned whether your eosinophil levels are raised. You can also have more than one type of asthma eg both allergic and eosinophilic asthma (I think I may have relatively well-controlled eosinophilic asthma plus weird and poorly controlled non-eosinophilic, but this is speculation because my consultant doesn't like dealing with the non-eos side at all and so pretends it isn't there/isn't really a problem at all).

Non-eosinophilic is probably at least two different types (neutrophilic and others), and isn't nearly so well understood as allergic/eosinophilic. However, there does seem to be some evidence that it doesn't respond that well to steroids, so if someone has non-eosinophilic asthma that isn't well controlled, it's a better strategy to add in or increase other types of medication eg long-acting beta-agonist (LABA) or add in something like Spiriva, instead of increasing inhaled steroids. This is one of the many places where the intrinsic vs extrinsic categories, or seeing it as 'allergic vs everything else' really don't help much.

In terms of triggers, there are certainly specific triggers associated with allergic asthma eg allergies to pollen or animals which can set off asthma and also hayfever. Non-eosinophilic asthma is more likely to be triggered by things like scents, steam, paint, deodorant, weather conditions etc, but there's a lot of overlap and variation - plenty of people with eosinophilic asthma can also be affected by some/all of these. The symptoms and signs can often be similar or identical too, regardless of the underlying biology causing someone to have asthma symptoms. I am non-eosinophilic but when I'm getting worse or have a bad attack I present very similarly to a friend who has eosinophilic and allergic asthma, though our triggers may be quite different.

In terms of dust and pollen: I've had an attack once which the doctor in hospital felt was likely dust-related as I'd been moving house recently. I said oh I'm not allergic to dust and he said maybe not, but it's an irritant and it can still cause problems with lungs/asthma even if you don't have a dust mite allergy.

I am also one of those people Twinkly mentioned who has hayfever as a separate thing from asthma (there's a reason my avatar is a unicorn lol!). As far as I can tell, pollen doesn't trigger me directly, but I was told by a very helpful consultant that I should still keep on top of my hayfever and take fexofenadine and Avamys spray to avoid postnasal drip, because that can still affect asthma even if the pollen doesn't directly affect it. I seem to be worse in the winter too with the rhinitis, so I'm not even sure if it's entirely allergic (the spring rhinitis probably is allergic, but not sure about my winter issues - rhinitis can be non-allergic too).

I hope this is all helpful, but wonder if you'd also benefit from chatting to the asthma nurses? They might be able to shed some more light on what your consultant is telling you and have more time to talk things through (also, usually, better communication skills than some consultants...). AUK helpline - 0300 2225800 M-F 9-5; AUK WhatsApp - 07378 606728.

LRLR profile image
LRLR in reply to Lysistrata

Hi again Lysistrata,

Have thought a lot and researched what you have shared trying to figure out which one I may have so can try the best treatment.

May I ask, if I had the non-eosinophils type asthma then this would not respond so well to steroids? So when I was on 8 puffs a day of clenil and didn’t respond well this maybe why? But when I had the LABA in fostair this helped more, and when I had even more LABA in fostair 200 this settled it.

So my experience would then fit with what you say about treatment for non- eosinophils asthma?

I am going to request a test to see if this is the case.

Thanks for your time

Lysistrata profile image
LysistrataCommunity Ambassador in reply to LRLR

Sorry, just noticed I didn't reply to this before! I saw below your eosinophil count was normal which might point towards non-eosinophilic asthma (I say might because, while it isn't necessarily the case with you, it's also possible to have controlled eosinophilic asthma with the symptoms caused by something other than asthma. However, as you've mentioned still having peak flow variations and reliever inhalers are helpful, it does sound more like asthma is the main issue).

Your response to the increased steroid vs LABA is also consistent with non-eosinophilic asthma - there are studies about how increasing LABA instead of increasing inhaled steroids is more effective when someone has low/normal markers of eosinophilic inflammation. Non-steroid add-ins like Spiriva can also help - I saw you're looking into that.

I forgot to mention before that I'm on montelukast as well - it's not dramatic, but it seems to improve my exercise tolerance. My consultant says it's a useless drug and won't help me because my asthma isn't allergic, but it seems to anyway. (He doesn't really seem to allow for individual responses). I also note that while I wouldn't say my asthma is exercise-induced exactly, montelukast has also been shown to help exercise-induced as well as allergic asthma, and it might be that side it's helping with.

Just a note that as you've seen, there isn't much information out there about non-eosinophilic asthma, and that also means doctors often aren't so familiar with it - so reading up what you can is a good idea before approaching your GP! I will say that I'm glad your consultant seems to remember asthma basics like variability and response to inhalers, even if they do have a slightly old-fashioned approach with the intrinsic/extrinsic language. I won't rant on here, but it's amazing how those things can be forgotten when consultants have shiny machines to test eosinophils etc and the patient doesn't have eosinophils!!

LRLR profile image
LRLR in reply to Lysistrata

Hi Lysistrata,

That’s no problem thanks for replying again!

This is so useful thank you, I feel like I’m getting somewhere with it all.

I do notice a difference if I don’t take montelukast so I feel like that’s doing something. I do caugh and struggle with exercise too but like you don’t feel it’s exercised induced asthma as it only happens when I’m not managed. I also have fatigue too during work outs so this is a sign for me that my asthma has deteriorated again, I have also read montelukast is good for exercise so I wonder why your consultant doesn’t realise this?

So maybe I should ask for a LaBA inhaler? Do they exist? I tried to research but read LaBA should only be taken in a combined inhaler so wasn’t sure.

Thanks for the heads up regarding GP knowledge on this. Fingers crossed my GP will be familiar and not think I’ve lost the plot! I need to learn how to pronounce eosinophils before anything else!l 😆

Lysistrata profile image
LysistrataCommunity Ambassador in reply to LRLR

Yes that's how it is for me with exercise - not really a problem unless I'm already having problems! Almost more of a sign that things aren't going well.

My consultant doesn't think montelukast is good because the trials weren't that impressive. However, I think that may conceal a mix of people who didn't respond at all, and people who responded well - that tends to result in a rather weak response overall. My consultant does have a tendency to prefer trial results over messy reality - I keep wanting to point him towards the research about how clinical trials in asthma and COPD are poorly representative of real world populations.

Single LABA inhalers do exist, but as you've seen, the recommendation is not to take these without ICS. This can be dangerous where there is eosinophilic inflammation, and I think most doctors would be reluctant to prescribe against guidelines at this point without knowing for sure that it is safe in non-eosinophilic asthma. Additionally, in asthma the current evidence suggests that a low dose of ICS seems to be preferable to no ICS at all, even in people with normal eosinophil levels (COPD is another story).

However, it might be possible to discuss with your consultant if you could, for example, take ICS and LABA in separate inhalers, or explore other ways to increase the LABA dose without automatically increasing the ICS dose. Or other options! They're out there but it definitely requires some discussion (and while I know you're sensible and would do this anway, for anyone else reading, please don't try adjusting your inhalers without medical input).

Crossing fingers it goes well with your GP. Is there an asthma nurse who works with the consultant who you can see if the GP isn't helpful or is reluctant to adjust things? Sometimes they prefer to leave this to the hospital as it is more complex.

LRLR profile image
LRLR in reply to Lysistrata

Thanks for this that’s all really interesting. Yes I have an appointment with the consultant’s asthma nurse but not until September.

My GP’s haven’t been keen to change things in the past as I’m under the consultant but I am becoming worse so I am going to try with them again. My consultant wanted me on fostair 100 with montelukast but it just doesn’t seem to be enough.

Thanks for the info on the separate inhalers I will see what the gp thinks about it all.

Really appreciate your help.

Apologies for all the questions!

MaggieHP profile image
MaggieHP in reply to Lysistrata

I’m also one of those who has allergic rhinitis separate to asthma - well sort of. Cats and pollen will trigger the rhinitis but not the asthma; dust/dust mites can trigger both; mould will trigger the asthma but not the allergic rhinitis. With the allergic rhinitis I still don’t know what all my triggers are and given that, like asthma, they can change I probably never will - sigh!

LRLR profile image
LRLR in reply to MaggieHP

Hi Maggie.

That makes so much sense to me and I can completely identify! I don’t know what causes my rhinitis I just guessed it was hay fever. I don’t get itchy eyes with hay fever but constant sneezing. I definitely get breathless by pollen and dust gives me coughing and asthma attacks. It’s just all so random isn’t it!?

I am quickly learning to accept we will never know x

MaggieHP profile image
MaggieHP in reply to LRLR

I can sympathise with the non itchy eyes too. Sometimes I get that and sometimes I don’t which makes it incredibly difficult to work out whether what I have is allergic rhinitis or a cold. When I was in my teens I got roundly ticked off once by my school’s headmistress for coming to school with a cold. I got sent home but was perfectly able to attend the next day when everything had calmed down: a red and sore nose but nothing else. I used to say that the only way to be certain as to which it was depended on whether I also had a sore throat (cold coming on) or itchy eyes (allergic rhinitis coming on). That’s still the case and if I get neither … well🤷🏼‍♀️.

Seeing what Lysistrata has said about it being possible to have both non allergic and allergic rhinitis I’m now wondering if that explains the no warning signs. So is it a case of if I get itchy eyes, it’s likely to be allergic rhinitis; sore throat - a cold; nothing - non allergic rhinitis?

I’ve never had any testing for eosinophils either - but given that my asthma is well controlled by my inhalers that’s not particularly surprising. I have had an IgE count (as part of food allergy screening, all of which came back negative), which turned out to be surprisingly high. The gastro cons who had ordered the test was astonished. I was symptomless at the time of the test.

twinkly29 profile image
twinkly29 in reply to LRLR

My consultant often says "it could be anything with you!" 🤣

I have non allergic asthma however have hay fever which triggers my asthma. I spoke to the A n E consultant and he said hay-fever may not necessarily show in blood tests, wether this is actually true who knows lol. Consultants have been known to come out with incorrect info! However for me it seems to be true, Montelukast and fexofenadine helps me massively to.

In regards to dust and things being a trigger, this could still be true in non-allergic asthma as dust is a natural irritant, so could potentially trigger your asthma just without an lge mediated response (allergy response) if that makes sense!

You can also have non-allergic rhinitis which incidentally I get to 😂 Nasal sprays still help massively. As Twinkly said, I wouldn't stop any meds without discussing it first with your dr, especially if you have felt they have helped. There are lots of different types of inhalers you could try. Have you had your eosonophils checked? As this can help determine wether your steroid responsive. I am an anomaly in this area to though as my asthma is non-eosonophillic but responsive to high dose steroid 🤷‍♀️

Asthma is hugely complex, (and confuses a lot of medical professionals!) And our bodies don't always react in a text book way!

Thank you all so much for this helpful insight this has really helped me.

I had not heard of the eosinophils type asthma and I do not think my consultant has checked for this? They just did allergy testing (IgE) and said all tests are normal and not showed anything. I’m pretty certain I have hay fever so I’m surprised that didn’t show. It’s comforting to know I’m not on my own with that happening though!

My consultant didn’t seem too concerned with it and says I still definitely have asthma. But I was very shocked. Maybe they do not test for eosinophils until further down the line? As my diagnosis is a brand new diagnosis only 5 months ago so perhaps I’m not seen as ‘difficult’ yet?

But thanks for the advice I will not stop taking the antihistamines and montelukast then! And yes I think I will give asthma nurses a call! X

Lysistrata profile image
LysistrataCommunity Ambassador in reply to LRLR

I have hayfever too and it's never shown up - one allergy consultant who was on the rota when I was admitted told me that negative allergy tests are a bit useless because they don't necessarily mean no allergy.

I've also had consultants disbelieve I really have hayfever, but they should try seeing me near trees in spring! Admittedly it's a bit unusual to have it with non-allergic asthma but I did a bit of reading in the scientific literature and it's absolutely possible.

LRLR profile image
LRLR in reply to Lysistrata

Thanks for this Lysistrata.

So the reality is anything is possible and tests don’t always prove anything. I am always astounded when medical professionals actually refuse to believe what real human beings are saying to them about their symptoms because it doesn’t match the theory which they believe to be most credible. It staggers me.

twinkly29 profile image
twinkly29 in reply to LRLR

Spot on!

My allergy test too all came back negative, and at a sweep of a pen it was not asthma! Funny though the other Pen added meds, commented how inhalers worked. Came away more confused. I have lots of triggers which are listed on my plan. So tests negative yet triggers cause?

My last blood test showed I'm immunodeficient. Severe risk of infection. This is seen often in asthma and COPD I was told. I'm awaiting 2 vaccines.

I'm on pred at the moment so can't have them.

LRLR profile image
LRLR in reply to Blue-Breeze

Sorry to hear you can’t have your vaccines yet. I hope you start to recover soon and come off the pred x

Blue-Breeze profile image
Blue-Breeze in reply to LRLR

Thank you x

Hi,It’s great that you found this forum and are getting to know all the information on here that the doctors never tell us!😆.

It took me nearly 20 years of asthma to find out that I’ve got non eosinophilic, non allergic asthma, which it turns out is difficult to control 🤦🏻‍♀️

I feel lucky that I’ve now got a great specialist asthma nurse who understands that all asthma patients are different to each other; follows new research and most importantly listens to me 🤗.

I’m now on Azithromycin (among other things) which seems to be helping to control my asthma now.

I had allergy tests which were negative and I was thinking but how can I react to so many things (all the same triggers as you, plus others) and not be allergic to them! I think it helps to know you’re not on your own.

Good luck in your personal search for the right drug combination that helps you 🤞

Hi Celia,

Thanks so much for this. Gosh that is a long time to go without not properly knowing. I’m glad you have a great nurse now and a ‘category’ for your asthma. I think this forum and asthma UK are wonderful- I would be utterly lost without you all!

I have asked my GP for more info on my blood tests and it turns out my consultant has done eosinophils testing and the count is all normal. So I’m deducting that I am also non-eosinophils and non-allergic like you!

I have tried to research the non-eosinophils type but there is not a lot of information out there. My GP’s were baffled with me when I was still having attacks on what they called ‘strong medication’ (pred/fostair) but if non-eosinophils type doesn’t respond well to steroids that would explain why, maybe? Maybe that’s why your asthma is difficult to control? I am just speculating and maybe completely wrong!

I am trying to find the right medicine. I have been researching the Spiriva that was mentioned on here and doing some preparation before I speak with the GP this week. I know a lot more than I did this time last week so thanks everyone!

Hi,

I know, 🤦🏻‍♀️until I found this forum I knew next to nothing about asthma. It was like coming out of the dark into the light to find other people with ‘weird’ asthma like mine… the kind that didn’t match the textbook.

I think you’re right about the response to steroids with non eosinophilic asthma.

For me, when I have a flare up I think it probably takes a week of pred at 40mg to start to make a difference and then I have to have a further week because I’m still SoB, but as soon as I come off…wham it’s straight back! I end up then being told by everyone from the receptionist to the doctor how it’s not good to have too much prednisolone, (I know that but I need to breathe!!!) before being given a step down week. So frustrating!

Then with my last flare up it took me 3 months to actually wean off them.

Over the last few months I’ve been given Spiriva then Montelukast. I’m not sure either of these have made much difference but I’ve definitely improved now I’m on the Azithromycin 3 times a week. The antibiotic works on the inflammation so hopefully I won’t need pred or at least not as much.

Hope this information adds a little more to your jigsaw 🤞

Hi CeliGosh that sounds exhausting how horrible for you. That’s a lot of pred but yes of course you need to breath what choice do you have but to take it. Being SoB all the time must be horrendous.

That’s really good you are settling a bit now.

That Azithroymicin drug is really interesting as I read something about it being potentially used for Covid-19 treatment, as well as non-eosinophils asthma. Maybe this is the future!!??

But glad this has worked for you at the moment!

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