I was at the respiratory clinic for my asthma this morning. The doctor prescribed me Montelukast. Please can you tell me what your experience of this is?
Thank you very much.
Montelukast : I was at the respiratory... - Asthma Community ...
Montelukast
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AppleOrchard
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I like Montelukast, it has helped me. First time I was prescribed it, I didn't notice any benefit, but this time it has helped. I got vivid dreams at first, but they wore off, though I understand some people get nightmares for a while.
I am glad to say I have had no side effects at all from it and my asthma is currently well controlled.
That’s amazing. I hope I have the same! Thank you
Thank you for you reply. It’s good to hear all has been okay. I started last night. I have quartered the 10mg and I’ll start slowly. I’m very sensitive to pills. Thank you again.
Everyone is different. In my case I had more energy and a lot less breathlessness for a few months, was over the moon, until I started to get a lot of pain in my arms, legs, then tingling and burning and shooting pains in my feet and hands, and weak painful wrists and hands. I stopped taking it.
I’m sorry it ended up with you having to not to take it any more. I hope the tingling stopped. Thank you
The shooting pains eventually went away, then I researched natural leuketroine inhibitors and started to take them and felt a lot better.
I’m very glad it went away. It must have been very painful.
Thanks. It was more worrying, shooting pains from nowhere, and the way my hands got was worrying as could not hold things and pain in wrists all the time. if you research this medication montelukast you will see that SOME people not many can get such problems and/or churg strauss. i would have liked to have carried on taking it otherwise. how are you feeling now?
That really does sound awful; apart from the pain and inability to do things, it must have been so scary. I have read a lot about Montelukast, which is why I have been so resistant to taking it. When I couldn’t really play football with my little boy or walk up the hill without wheezing and my chest tightening, I decided I had to try.
I have started by quartering the 10mg pill. I took a quarter last night. I’ll take a quarter for a couple of weeks and then take another quarter. I really want it to work. I have a bit of a headache this morning but I often have headaches so it may be nothing to do with it.
Im already on relvar 184 and a really strong antihistamine so I’m not sure what more can be done.
I think one way is to make it a smaller dose, and maybe another way - and maybe both together - is to take it on days you are going to be busy and out and about playing football or whatever, and not the other days?
Thank you for the suggestion. Is the effect not cumulative? I do these things most days as we have two dogs!
I have four dogs and have lost count of the number of times a doctor has tried to say this why I am ill - totally ignoring I was just as ill before I had any pets! and totally ignoring they are totally hairless dogs.
I can never understand why some asthmatics have dogs, cats or smoke....
It's generally not the best idea to alter dosing of a medication this way without medical advice, or to advise others to do it. Montelukast isn't designed or approved to be taken occasionally/as needed generally - you need to keep at it every day to see a benefit. I realise a small number of people do have problems with it and need to stop, and children now get a smaller dose. However, as with anything the people who have problems are the people who tend to post about it disproportionate with their numbers. Many people have no problems and find it works well, or that it doesn't work but they have no side effects.
Appleorchard, I would just take the montelukast every day as prescribed for now or you are unlikely to see much benefit, If you're concerned you could always ask a pharmacist or your GP. Or call the nurse helpline on 0300 222 5800, Monday-Friday, 9am-5pm. Or WhatsApp on 07378 606728
Thank you! I will be taking it every day. I’d forget to take it for a start. I’ll build up to a full dose very slowly so it reduces the risk of side effects.
Very good advice - its prescribed at the right level to get the result. Breathing well is so important so you can keep active which in itself help with weight, mental health and circulation.... an open mind and positive approach rather than looking for side effects is probably a useful approach.
Hi , just wondering what natural leuketroine are you taking. Many thanks.
Hi, just to let wiserlady and you both know the community guidelines on this:
You agree not to:
Post messages promoting any product that claims to cure asthma or reduce asthma symptoms. Any such post will be removed immediately by the moderator.
Link to post with more information and guidelines on this: healthunlocked.com/asthmalu...
thanks you for that reminder - its usual to find those who are promoting so called natural remedies are selling it at huge cost...
I resisted being prescribed Montelukast as I had read up about all the side effects. However I got to the stage that I was desperate to try anything. To my delight I had no side effects and it works reasonably well.
I’m the same but I need something. I can’t walk up a short hill or play gentle football with my little boy without becoming breathless and wheezing. I hope I don’t have side effects either. Thank you
Please try it with an open mind - it can be a real game changer
Please be cautious. I was the same and it took months for the side effects to appear.For a few months I felt terrific, much better, then when they kicked in it was bad and had to stop taking it. The doctors dont want to admit it, I knew it was caused by this, it was the only thing that had changed and I am not stupid, if you look online thoroughly you will fin d lot of information about churg strauss and such side effects from it, and thats what happened to me.
I have read all about some terrible side effects and that’s why I was so reluctant to take it. I’m starting low and going slow to a full dose to try and minimise the side effects. I will definitely stop if I get any side effects.
Glad to hear it
I’ve been on montelukast for 22 years - still works, still no side effects. Hope it’s as helpful for you!
I’m so glad it’s working for you. I really hope it does for me too. I started slow and will build up to give it the best chance. Do you still have flare ups?
Thank you
Well, I’m a bit unusual - I’m more of a slow slide person than sudden flare ups, and we’re having extreme difficulty finding inhalers that help without dreadful side effects, so at the moment it’s basically montelukast and salbutamol keeping me going - hoping the consultant will have some suggestions in a couple of weeks.
I’m sure you have tried it already, but I have found relvar really great. The other combination inhalers made me shake so much. I’m really you can find anything. It’s such a dreadful thing. People have no idea …. I didn’t until I started.
It helped me with tight chest completely. I'm very happy, no side effects.
Thank you - I hope it does The same with me. I’m fed up getting a tight chest!
I was prescribed Montelukast to alleviate the symptoms I was getting through the night, most nights. It has helped massively, and now if I wake between 4-5am with a tight chest for a couple of nights in a row, it’s a pretty good indicator that I’m going to be unwell.
That’s so good it’s alleviated your symptoms. It’s amazing you have a indicator as to when you’re going to be ill. I hope it works for me too. Thank you
Yes, it is really useful - it’s then a gamble as to whether I crash rapidly in a matter of hours - normally no identifiable trigger. Or have an inexorable (and frankly tedious) decline over a few days - ordinarily heat, chest infection or when it’s cold and raining.
I take a whole bunch of other meds but Montelukast had a very specific, and positive, impact. Hopefully it’ll make you feel better, it may take a while to impact.
Thank you and me too!
It must be hard not knowing what is going to happen.
Ive been on it for around 20 years - it was a total game changer and I am hugely grateful to the asthma nurse who suggested it would be good to try it. I noticed a real improvement within a week!! I think if you read the potential side effects it can be self fulfilling.... I was just so very keen to be able to regain my lung health and there was very little known about side effects at the time. That said I didn't put on weight with the contraceptive pill and have sailed through the menopause without so called brain fog... so maybe I'm just lucky??
You do sound lucky!! I am glad to be trying it and will hope for nothing in terms of side effects and lots in terms of benefits.
It is always heartening to hear when a medicine is so good for someone.
Thank you for sharing.
Hi, I was on Montelukast for about 2 years. It was started shortly before Covid hit, so my chances to discuss anything after that were reduced. I did not find it helped me at all, but then I don't believe I have any version of allergic asthma which it seems it is mainly used for. My eosonophils level for allergic induced asthma are very low.
Though I never had nightmares or anything, the quality of my sleep was affected. I could cope with it, but it was eventually a relief to stop using it.
If it works for you that is great! I helps many people so I certainly wouldn't dismiss it.
I am sorry it didn't help you. It is definitely for allergy induced asthma, according to the consultant. I have that so hopefully it will help. I have started on a low dose in the hope of reducing side effects and ensuring I give it the best possible chance of working.
Hi , I'm on Montelukast 2 weeks now,ended up in hospital with allergic asthma. My breathlessness is completely gone the last 2 days. I'm also on relvar ellipta inhaler and low dose of steroids to wean off intense amount I got in hospital. I will only be on Montelukast short term and then hopefully relvar will prevent another flare. I was just diagnosed with an autoimmune disease but have had bad asthma flares every 4 years or so.
I didn’t see this at the time. How are things going? I hope you have found the relvar helpful. I’m on relvar too.
Thank you for your concern, but it is OK. I am going though I really good period with my asthma, with the odd blip here and there. I am also far better at handling or knowin what to do when I encounter some of my major triggers, like cold air and pollution especially indoors. So it is far better than it has been for some time.
I hope it’s still that way now! Asthma is an awful disease in so many ways.
Unfortunately I didn’t find it beneficial and it affected my sleep pattern and give me palpitations so I stopped it. That said, everyone’s experience with this drug is varied and different
I’m sorry it didn’t work for you. If only it worked for everyone.
How'd it go with the montelukast a few months later? I tried it for 1 month last year but didn't notice much difference, but I started taking it after my allergy symptoms were already pretty bad. Toying around with the idea of giving it a long go, though it did give me some pretty vivid nightmares/weird dreams for sure...
Hi please see below. Meant to post as a reply but new to this. Hope it helps.
If you do decided to start taking it again, try building it up slowly. That’s what I did and it has worked for me. I think it does make a difference for me, but I wouldn’t say it’s life changing. I’m glad I’m taking it though.
Late comment but been taking Montelukast now for 3 months. I have bad allergies to just about everything, asthma and or COPD, no one can decide, along with segmental collapsed lung. Inhaled steroids next to useless and leaving me with a badly hoarse voice or no voice which drives me crackers. I'd just about given up hope of ever being able to breath and talk clearly again. Both my grandfathers died very early through asthma and I seemed to be heading that way.Consultant suggested Fexofenadine and Montelukast. I was very very sceptical as spent years being messed about with oral and inhaled steroids but gave it a go.
Result has been amazing. I've all but stopped the inhaled steroids and now only use Symbicort as directed as a reliever very occasionally as salbutamol ceased to have any beneficial effect on me years ago.
I never ever read the side effects, I think that's self fulfilling. Instead if I notice something different with a medication I give it 2 weeks. If it doesn't go away then I check side effects. Invariably it's not a side effect but food, rest or stress, in short lifestyle.
Would highly recommend Montelukast. So far it's been amazing.
My wife's even planning the retirement she never thought she would get with me.
Hope this helps.
Thank you for your comment. I’m so glad you found a way and that you’re feeling so much better now.
It’s interesting what you say about your voice. I have been having problems with my voice as well. It’s horrible. I thought it was my thyroid but maybe it’s the asthma.
I started taking Montelukast some months ago. I didn’t want to have side effects so I started by taking ¼ of a tablet. I increased in quarters every two weeks. I am really sensitive to drugs so it was the way to make it work for me. I have managed to take it with no side effects. I’m also taking Fexofenadine. I have only had one asthma flare up since starting. Hopefully I won’t have another one any time soon.
Thank you again for sharing your experience.
Your more than welcome. Nice to hear that Montelukast and Fexofenadine are working for you with no side effects. My voice problems were definitely due to inhaled steroids. As I've been able to reduce the use of inhalers my voice has returned to normal very quickly. I tried a spacer, salt water gargling even tried gargling with whiskey but nothing helped. Hope the tablets continue to work for both of us.
I’m glad you found out the source of your voice problem. Can I ask - did you just stop taking it without seeing the doctor? It seems as though you tried lots of things to make it work. Which one were you on? Do you manage your asthma without the inhaler? If this is what’s causing my voice problems, I’d love to stop.
I hope thé pills keep working!
Sorry for the questions.
Happy to answer all and any questions.
Sorry for late response didn't see your message. Yes I reduced my steroid inhaler unilaterally against asthma nurse advice so I'm not recommending you do that. I was absolutely completely sick of the hoarse squeaky voice. I have a naturally low deep voice. Such a joy to hear your own voice again. They've had me on everything and it all reduces me to a breathy shallow voice. I can either breath or speak but not both. Best inhalers for me are Seritide or Symbicort but both and all screw up my voice. As I seem to have allergic asthma, amongst other diagnosis's, weve been fanatical about removing every possible allergen and now wash and spray everything with anti allergy detergent. The NHS has been singularly useless. They really don't care about allergy sufferers. Their attitude is avoid the problem. Well I can avoid cats, dogs, horses (hard) but how can I avoid tree and grass pollen and mould spores which are everywhere. I'm afraid on a less positive note I seem to be becoming tolerant if that's the correct word for it of Montelukast. Its gradually having less effect so I've been needing the Symbicort more so voice disappearing and becoming (excuse the french) a squeaky fucking mouse again. I'm feeling a little dejected at the moment and feel there is little help for people like me. I very much hope the Montelukast is working for you and continues to work. Best wishes.
oh gosh - I’m so sorry the montelukast isn’t working so much any more. That’s quite a worry, I’d imagine.
I completely get what you say about the voice. I’m afraid I was so sick of it, that I stopped taking my relvar. I really don’t want the voice issue any more. I can hardly speak when it gets bad. And since stopping, it’s come back. But I don’t know what’ll happen without my inhaler. Maybe I’ll be okay. I do t know how long it’ll take to show. And yes, it’s wonderful to have my voice back. I thought it was my thyroid until you said about your experience.
The NHS isn’t great with things like this - on the whole. I think my asthma is allergy induced, although the cold and exercise also play a part. And an open fire of any kind is a disaster for me.
I’ll wait and see what happens and then go from there.
I really hope you can manage your asthma effectively so you have a voice. The voice is such an awful feeling and it sounds so terrible! Like you say, I feel as though I’m squeaking!!
I hope things improve for you and thanks for the reply. Without a voice how do we stand up for ourselves. I read about so many people losing their voices to these inhaled steroids but the medics do nothing just talk about gargling with salt water. I hope some of them develop severe asthma. Unless you've had it no one understands what it's like not being able to breath. I've got used to it but I recently got a friend to put a wet cloth over his face to the extent I feel when I'm bad. Within seconds he panicked. We are just forgotten and palmed off. I've had some very sympathetic medics but also some absolutely awful ones. As a big outwardly strong man I have to say the worst have been women. My wife has wanted to floor a few. I've felt for years we need a powerful body to stand up for us instead of feeble charities. Anyway enough of the rant it gets me nowhere. The powers that be don't care and the asthma sufferers, suffer literally in silence. Stay strong and don't let the bastards get you down. Best wishes.
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