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Another Montelukast conundrum

Wheezycat profile image
28 Replies

I’ll try to keep this short, but not sure if I can. I was put on Montelukast a year ago, after yet another bout of respiratory virus leading to antibiotics and Prednisolone. Since then it has been much better, that is i haven’t caught loads of colds. Just one, and I could manage that myself, thankfully.

But I don’t suffer from hayfever etc, though I do have the odd allergy. And I react,though not to the point of an attack to a variety of other triggers, the most frequent one being anything that burns or smokes, including at times my own cooking. (I considered at one point whether I should change my own cooking entirely to steaming.) And I didn’t feel any immediate relief with Montelukast, the reaction many others talk of.

I was told it reduces an aspect of over reaction by our immune system, and that is of course good, if that is what is happening for me. The reduction of respiratory infections could just be a coincidence, not due to Montelukast. And I definitely had a problem last winter with cold air, so walking anywhere was really difficult and unpleasant, scarf or no scarf (it felt better with than without).

What is the experience of others, where allergies are not a major component? I would be interested to hear.

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28 Replies
Yatzy profile image
Yatzy

I think I benefitted a lot from Montelukast when my asthma became severe , mainly I think because I lived across a valley from a wood processing factory, with formaldehyde as part of its production system.

I’m sensitive to Salicylates, as well as smoke etc. This includes any perfume, chemical etc.

I’m now trying stopping the Montelukast, because I’ve moved house, well away from the factory. My asthma is generally better controlled but still reliant on usual inhalers. I’ve got a suspicion the Montelukast might be affecting my mental health now.

Maybe not the right thing to be doing mid-pandemic, but I’m shielded well. I’m on day 5 so far....no changes noted yet....will let you know. 😑

Wheezycat profile image
Wheezycat in reply to Yatzy

So that doesn’t sound ‘allergic’ but sensitive. And it helped. That is good to know that I am not alone in being urged to take it though I am not allergic as far as I know in asthma terms.

Yatzy profile image
Yatzy in reply to Wheezycat

In asthma terms, sensitive means ‘gives me asthma...always’.

For example, couldn’t have a general anaesthetic because they couldn’t eliminate all salicylates from procedure. Would only go ahead if ICU bed available. I went for the spinal injection, and all fine.

I have to watch my salicylates in foods constantly and not let the day’s total rise too high, body can only cope with limited amount. Also salicylates in all perfumes/chemical smells. This was main reason for Montelukast prescription. I had to stay in hotels with my job, and ended up wheezing the night away, and not fit for work next day.

Still a sensitivity rather than an allergy....no rashes or anaphylactic shock involved, so far anyway.

This is what scares me giving up the Montelukast, though, might have sudden asthma attack. 🤞But really feel I might manage without it now retired n all. Don’t like taking drugs just out of habit. So far using my rescue inhaler less. We’ll see. My current GP said try carefully, choose your moment, but it was prescribed by another GP where I used to live. So hard to find a knowledgeable asthma GP!

Wheezycat profile image
Wheezycat in reply to Yatzy

Yes, I understand the triggers and that sounds hard. Unfortunately yes, genuinely unfortunately, I am bad at taking Ventolin. I have been known for wheezing away, and still not taking it. I have to remind myself, even when I am unwell, however daft that is.

My current main guide, if that is reliable (not sure), was the winter period. I was so affected by 5he colder temperatures, possibly with an added insult of damp etc. Would Montelukast help with that? And if it didn’t then should I be taking it? By the way, I had to constantly remind myself to use Ventolin before venturing out, rather than test the situation yet again. (How many tries before you convince yourself that the cold is the problem?)

Still, I am not planning to change anything just now, but look forward to the time when I can discuss it all in a review.

I, too, am retired. This has all been happening since.

Yatzy profile image
Yatzy in reply to Wheezycat

I can’t take Ventolin either. Just does nothing to help, and makes the asthma worse if I persist. Then I realised salicylate ingredient, so GP swapped me to Bricanyl which works a treat, though no more than four doses a day advised....seems to work out mostly.

Don’t know about Montelukast and damp weather, I’m sorry, I’ve just used it all year round, with the usual scarfie in winter, or for perfume protection in shops etc. I think I’ll have to try a perfume test somehow before I give up on Monty....that’s what often takes me unawares 😬

LDloveslattecoffe profile image
LDloveslattecoffe in reply to Wheezycat

I like you am bad at taking Ventolin it's as if I don't hear myself wheezing. Many many times it has been friends or family that say "Lynne you need to take your Ventolin"

Wheezycat profile image
Wheezycat in reply to LDloveslattecoffe

Yes, that is me. People comment, not just friends, and I realise I have more of a problem than I had realised. That my heavy breathing (which is commented on) doesn’t quite sound normal. I take those comments seriously, as a reminder that I have something, and I shouldn’t just ignore it. Even if it doesn’t always make me take Ventolin, I use it to take note how I feel, so I am hopefully developing more of an awareness of my asthma.m

Babbela profile image
Babbela

When do you take your montelukast morn or night .I take mine in the morning it works better for me just an idea .

Wheezycat profile image
Wheezycat in reply to Babbela

Thank you, Babela. I did try that for a while last winter, but it didn’t seem to make any difference. Though if another winter turns out like the last one I may well try again.

But I suppose the core of my question is, if you have what seems to me like non-allergic asthma, how do you know it works? I have waited (well, sort of) for another onslaught of viruses to see if the ‘statistics’ of my responses suggested it helps, but so far (thank goodness) the onslaught hadn’t happened.

Babbela profile image
Babbela in reply to Wheezycat

If you take your ventolin less when taking montelukast I suppose you have allergic asthma but I was told years back I had nervous asthma so do they actually know what aggravates the disease think its trial and error .

Wheezycat profile image
Wheezycat in reply to Babbela

I agree. Though old fashioned I think I prefer intrinsic asthma to nervous asthma. Or straight forwardly non-allergic asthma.

Yellow75 profile image
Yellow75

I've benefitted from montelukast. Spent 8 years with very bad episodes of asthma and continually low peak flow. After a third Christmas with chest infection and episode that lasted for about three months, was put onto montelukast and fexofenadine. This was start of 2018, 2018 best ever year asthma wise. No episodes, just mild occasional reaction to secondary smoke. Peak flow also improved, got to 450 at asthma Review end of December 2019. PB for me in my life, usually even when OK no higher than 350. Did catch a virus early this March which did exacerbate symptons and ended up needing steroids. Also had problems with hayfever and a bit of an episode of asthma, in April. Though generally still feeling better, and peak flow never fell below 300. It's back up to about 420, still having issues with hayfever. Overall wished I'd gone on to montelukast years ago.

Wheezycat profile image
Wheezycat in reply to Yellow75

Interesting! Those answers are the kind of thing I was wondering about. It does suggest to me that my lack of steroid tablet issues this last test may we’ll be helped by Montelukast. I have a history of not recognising my own warning signs, either not noticing or dismissing if I do. And maybe my warning signs have improved in spite of my last winter issues with cold weather etc.

Yellow75 profile image
Yellow75 in reply to Wheezycat

It may be that montelukast has helped. It is longer term medication rather than a reliever. I think for me montelukast has helped with smaller airway issues that Inhalers haven't been able to really work on. I've got pretty good over last 8 years at spotting my symptons and early warning signs. Though it's taken total of 36 years since had first attack at 9. Although I have allergic triggers I also think with me stress and anxiety may play a bit of a part, my job is very stressful. Last year was interesting as job no less stressful but no asthma. My main health issue last year was severe episodes of stomach cramps, doctor thought might be Irritable bowel disease as they found inflammation in one of tests did. Turned out to be nothing, got diagnosis of Ibs instead. Ive since stopped taking the proton pump inhibitor I was on for acid reflux/ asthma and had no major stomach pains. Did wonder if not having these may have made asthma worse this year, but stomach pains were quite debilitating and I'd rather not have them again. Plus asthma only very mild at moment, so not overconcerned and doc has given me emergency steriods just in case.

Other thing I also noticed is if my vit d levels low also have a tendency for asthma and stomach issues.

Wheezycat profile image
Wheezycat in reply to Yellow75

All this is always such a conundrum, isn’t it! I also have IBS though these days it seems to have calmed down on the whole. No dramatic episodes for quite some time, just a bit of discomfort from time to time, which I have learned to manage on the whole.

Ditto just now with my asthma, and, yes, it is entirely possible that the Montelukast has helped, though I can’t see how it could stop me picking up viruses! But last winter felt hard, nothing dramatic, it was just how significantly the cold affected me if I tried to walk outside. It really affected my energy levels generally. And that was well after I started Montelukast, so that leaves me uncertain. So in desperation restarted taking Omeprazole daily, and my Fostair was increased. So now things feel loads better on all fronts. And as it is warmer it really is not the same issue! Now my knees complain if I walk too much, not my lungs, except possibly uphill. But all last winter issues have left me feeling so unfit! I am trying quite hard to do something about that, though I am no natural athlete at all. I get bored with it very easily. At least, luckily, I don’t have hay fever, so nature coming alive is no issue for me, I can just enjoy it all. And yesterday, in the high winds we had, I decided to try a Joe Wicks even (no Lycra in sight), but I am hoping that can work for me into the winter months as well.

Yellow75 profile image
Yellow75 in reply to Wheezycat

You're right with it being a conundrum. Asthma is complex. I think with viruses it's because montelukast works at a cellular level blocking leukotrienes and preventing them from going into hyper drive and causing inflammation reaction. So may pick up a virus, but tendency for body going into full asthma mode, is reduced, so colds tend to be regular like non asthmatics get. My mums also on Montelukast and she has noticed major improvements too.

Cold weather can be problematic as well, it's cold air I find. My first ever attack I think was partly down to do a cross country run in fog in late autumn.

Hopefully weather will stay nice, Hope your exercise regime goes well.

Wheezycat profile image
Wheezycat in reply to Yellow75

Yes, that was roughly what was implied when I was first strongly adviced to take it. That overreaction was the concern.

As for exercise, yes, I started a Joe Wicks thing yesterday, then woke up with a strained (no worse) back today. I think that may have been caused by my having a go at The Plank. It was OK yesterday, but not today. Mind you, my elderly body has developed all sorts of squeaks during this better weather, as I now have energy and can do things. They all go, though.

Yellow75 profile image
Yellow75 in reply to Wheezycat

Glad to hear aches easing. I think it's a case of easing yourself in and see how you get on. Planks are so weird they look so easy, but they are hard to do. I'm pleased if I get past 20 seconds.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to Yellow75

I hadn't thought of it this way - not sure my body got the memo on that! It doesn't seem to make much of a difference to my reaction to viruses, but does seem to help exercise tolerance. Glad to hear it might be helping others with reduced reaction to viruses.

Yellow75 profile image
Yellow75 in reply to Lysistrata

Montelukasts impact does seem to vary, I think it does depend on what specific triggers are for asthma and how the asthma affects the individual. I have read possibly in the leaflet that comes with medication that montelukast has been found to help with exercise induced asthma too. For me at moment combination of meds seems to work. I'll see how I go for rest of year.

Yellow75 profile image
Yellow75

I'm on bricanyl as reliever, found so much better than ventolin. I have been told I've got an allergic component to my asthma.

I have been diagnosed with asthma since 1990. I know I have been on Monteleukast at least 22 years.

It is that long ago I can't remember why I was put on it and haven't tried not taking it to see if it worsens but been on so long now I wonder if it has any affect now.

It can help people with asthma who have breathing difficulties when they exercise (exercise-induced asthma) and seasonal allergies, such as sneezing, itchiness and a blocked or runny nose (allergic rhinitis)."

Which makes sense, I get Hayfever and hives and difficulty breathing when exercise.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador

Hi, I too have wondered this about montelukast!

I appear to have non-allergic asthma but I do have hayfever, which appears to not trigger my asthma (my current consultant is sceptical this is allergic, but while I do have issues at other times of year now with my nose which may be non-allergic, it's definitely worse in tree pollen months).

I have also managed to have one positive and one negative mannitol challenge: mannitol acts on the same pathway that montelukast works on, and the mannitol challenge is thought to be more relevant to allergic and eosinophilic-driven asthma. I think intrinsic is an older term from when they understood less about the drivers of asthma, so I would also say non-allergic and non-eosinophilic for me; my triggers are also things like weather, smoky things, perfumes, scents, viruses. I persistently fail to have any useful markers of anything they have good drugs for, though I do get benefit from inhaled steroids.

I had asthma as a child and that was pre-montelukast (approved for use in about 2000, when I was 15 and had very mild asthma so no need of it). When my asthma came back after swine flu about 10 years ago, I tried various steroid inhalers and nothing really worked. Then my GP suggested trying montelukast; they were saying it wasn't asthma and he said if it worked it probably was asthma. It was amazing - started to work in about 3-4 days. I had been crawling around like an old woman, the least thing made me breathless and just walking down the corridor was a huge effort - I got told this was just anxiety. The montelukast made me able to function more or less normally again, though it wasn't a cure-all and I did need to add more.

I have been on and off it since then: one time had an awful consultant who insisted I just had mild asthma and wanted me off almost everything, starting with montelukast (she didn't get any further, and the asthma nurse there put me back on the montelukast as she felt I had got worse off it, and added Spiriva).

My current cons said it shouldn't work for me because I'm not allergic and he didn't have much faith in it anyway so I should try stopping it. I think he has too much faith in standard clinical trial design - it seems to be one which doesn't work at all for some and well for others, and the trials didn't know who that was so overall the effect doesn't look great.

I found while I didn't have more admissions off it, I had a lot more days being like I was before I first went on it ie limbo - getting very intolerant of even mild exercise and not able to do much, but not acute. tbh I find that way more annoying than having a full on attack! I learned from the previous time and asked the asthma nurse if I could restart - bingo! It's definitely not as amazing as it once was (I have heard it can lose its effect especially for adults), but it does help with that limbo kind of state so a win for me.

I believe they also found it helps exercise-induced asthma, so perhaps that's why I've found it's helpful? I think you also mentioned issues with exercise tolerance so perhaps it's helping that side for you too?

Hope this rather long ramble helps...

Wheezycat profile image
Wheezycat

Oh, goodness, so much information there! But what you say is always interesting and useful. So thank you.

I am not a severe asthmatic, rather a moderate one, though I know that is not a term in use any more. And I have a strong suspicion that I had the markers, as it were, even when I was a child, as I was, and still am, a cougher. But I have no memory of breathlessness etc from then, and as it was in the fifties, there was probably not much anyone could have done anyway, bar very basic, old fashioned help. It was in the family, though.

Yes, I agree the term non-allergic is better, though I have never specifically been diagnosed as such. I do have the odd allergicy thingie, like I am pretty prone to urticaria, through the years in varying manifestations, including angioedema, though that is a long time ago. So from time to time I do react to things. I do have a clutch of triggering sensitivities, my reaction to my own cooking, toast making and cake making being the most annoying, apart from those embarrassing moments when I have to ask a client to please use less, or no, aftershave and perfume. And other stuff. It is possible these things have improved with Montelukast, though it is too subtle for me to be sure. Good if it has got better, but it is still there.

As for that tiredness, listlessness etc, etc, I suffered that all winter, but I was on Montelukast at that time. As you say, it is exhausting to feel listless, feeble, exhausted and unable all the time! Just now it is so much improved.

In current circumstance, I am not changing anything as I am fine, Asthma wise! But I look forward to having a good review one day when I can talk it all through, as I am concerned about how much medication I am taking, for asthma but not only.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to Wheezycat

Glad it was helpful! :) Reacting to cooking and baking must be very frustrating.

I think montelukast is likely to be having a subtle effect but that does make it hard to notice. I mean it's definitely not a dramatic one with me -I have other meds I really really don't want to miss at all, whereas this I could without anything awful happening but would prefer not to. I actually thought my Spiriva wasn't helping and asked to stop it. Thankfully they said no, because later my GP surgery messed up on a prescription and I had to miss it for a couple of days, and found it definitely had been working a lot more than I realised!

Glad you're doing better atm :) Hope you manage to get the review soon -that is helpful to have with someone sensible.

On the topic of allergic sensitivities, I seem to have developed a new allergy to celery in the last 2 days. I don't know what my body is thinking of sometimes. It had better be celery anyway - I like it, but there are definitely more annoying things to be allergic to. Ditto mango, another weird 'allergy' i developed recently.

Wheezycat profile image
Wheezycat in reply to Lysistrata

I know what you mean! Celery is fine with me, but toast (I don’t eat it, but others do) and baking.............I also have IBS, and there have been times when my bowels have revolted against something or other, but I have no idea what. Once it was sprouted mixed pulses I think. It is no longer on my menu as the discomfort lasted a week. I asked about Spiriva once, but was told that with my propensity to oral thrush it was not to be thought of. Oh, well!

Just now I don’t want to experiment, but at some point I do, but in cooperation with one of the good asthma nurses.

Flowergirl78 profile image
Flowergirl78

I'm so glad you have shared your experience of cooking as I thought I was the only one! I usually always end up coughing and throat closes when hot oil is cooking especially if we are cooking with spices that really does me in, but yet I can eat spicy stuff with no problems. Smoke also gets me. Usually these things are more of a hindrance than anything else ie: have a little coughing fit but calm down if I leave the room and wouldn't need my inhaler but this year it's worse as hayfever is a bit mad this year so all my triggers are a problem st the moment.

Wheezycat profile image
Wheezycat in reply to Flowergirl78

It is annoying, isn’t it! Sort of adding insult to injury! I did consider a while back using only steaming as a method, but decided I would need to learn a new menu for that. Nothing wrong in that, but I like many of the things we eat. Yes, I too, react on cooking spices when I oil- or dry roast them, so I get on with it quickly. And, yes, smoke is one of my things. The hardest is if you aware somewhere where they use a wood burner, and they use it for hours. I have been fine with some, but others, even good one have been an issue. It is all the pollution they spew out. And I can see occasions where I would have to leave. It hasn’t happened yet, though. I do have an N95 mask, a Cambridge one, which lives in my handbag, so I can use it whenever. It rarely comes out, but it is good to have when I need it. I did once wear it when we were waiting for our Christmas dinner to be cooked!

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