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asthma not under control

47mum profile image
27 Replies

Hi for the last couple of years I’ve struggled getting asthma under control resulting in constant flare ups and lots of steroids.

I have been on fostair 200 for a couple of months but makes me feel shaky and really mucussy.

I’ve been prescribed montelukast but hear such awful things. I wonder if anyone has any suggestions on inhalers etc ?

thank you

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47mum
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27 Replies
janedivney profile image
janedivney

Hi! Where have you heard these “awful things” though? There’s such a lot of rot on the internet so I only use reputable sites eg nhs, patientinfo, and well moderated forums like this one. Never trust dr google or facebook.

I took Montelukast for maybe 7yrs & it helped my asthma enormously. Eventually, things got worse & I’m now on biologics, but Montelukast helped control it for a long time AND I felt the benefit within a week. So I say give it a go! Some people say it gives them vivid dreams & I found that too, but they weren’t nightmares or anything, just lots of detail. Quite interesting dreams in fact. Although most take it at night, if dreams bother you there’s no reason why you can’t take it in daytime instead. Some say it affected their mental health. I’ve been on antidepressants over 15 years but can honestly say Montelukast made no difference to my mood. However, just suck it & see, you might feel a real benefit 😊 and if not you can stop it.

janedivney profile image
janedivney

Oh, btw, you’d have to get your asthma clinic’s advice but another inhaler which really suits me is Spiriva Respimat. It’s a long-acting bronchodilator, totally different class of drug from Montelukast of course, but bear it in mind. Good luck with getting your asthma back under control x

47mum profile image
47mum in reply tojanedivney

Thank you so much, that’s reassuring. Maybe I’ll give it a try . You never know what might helps and what doesn’t during a flare up ! X

janedivney profile image
janedivney in reply to47mum

Exactly, and if you don’t try you won’t know x

Beth_19 profile image
Beth_19

I’m on montelukast and I’ve not had any problems with it. I’ve been on it for about 4 years now. Maybe discuss with your asthma team your concerns

JJ8675309 profile image
JJ8675309

My son had multiple neuropsychiatric side effects from this medicine. For more information there is a facebook group called Montelukast (singulair) side effects support and discussion group.

Homely2 profile image
Homely2Administrator

I was fine on montelukast, no side effects at all. If you are concerned about it, give the asthma UK helpline on 0300 2225800, office hours, a ring.

I did not get on with fostair 200, much happier on fostair 100 mart plus Alvesco, ask the helpline.

47mum profile image
47mum

thank you, im struggling with the 200 too . Might try dropping back to 100 x

Scrofulous profile image
Scrofulous

Many people on this forum have answered questions on Montelukast, the majority of whom, including myself, have no issues with it.

Gareth57 profile image
Gareth57

Hi, I seem to remember that the shakes got less the longer I took Fostair 200 but you could maybe ask if you cold go back to the 100 and take 8 doses spread out over the day instead? As for montelukast not everyone gets side effects, out of all the people that take it you will only hear from those affected (a bit like trying to decide on a new car, out of millions of satisfied owners you see the hundred bad reviews), I used it and it works well but you won't know if it works for you unless you try it, then if you don't like it stop.

47mum profile image
47mum in reply toGareth57

So true . I will try it and see . Thank you! X

BethCH profile image
BethCH

Hi, just to add to comments, I have been on montelukast for 8 years maybe more and it was a game changer for me - stopped that nasty inflamed airways and constant coughing, especially when talking. No side effects so far. Also on fostair 200 3/4 times a day and get the usual heart racing when taking it first thing in morning but this quickly subsides.

47mum profile image
47mum

thank you , I’m going to give it a try.

I’ve been on so many pumps , steroids, antibiotics.,I have acid reflux and post nasal drip. I don’t know how I feel any more!

Xx

Itswonderful profile image
Itswonderful

if you have been struggling for two years, would your GP refer you to a hospital asthma clinic?

47mum profile image
47mum in reply toItswonderful

I’m under respiratory care . It’s all trial and error at the moment. X

Itswonderful profile image
Itswonderful in reply to47mum

Okay. Is it a service specialising in the the whole of the airways? Just wondering if you have had input from respiratory physio and speech and language?

Poobah profile image
Poobah

I'm on Fostair 200/6 after trying Fostair 100/6, but it depends on your tolerance of the long acting bronchodilator in the inhaler; as you may have to take more doses of the 100/6, you would be taking more 6, which is the bronchodilator. But that may suit you better. The MART (maintenance and rescue treatment) treatment uses the 100/6 inhaler and you not only use it regularly in the morning and evening, but whenever you need it, up to a set limit of doses. Some people respond well to the MART regime.

But there are other combination inhalers and the only way you're going to discover if a different inhaler suits you is by giving it at least an 8 week trial. We're all different and all respond differently to these inhalers. I find Fostair really good, but that doesn't mean that you'll have the same experience. I was on Symbicort previously and it just didn't work well enough for me. Symbicort and Fostair are from the same family of combination inhalers called LABA (long acting bronchodilator antagonist plus steroid).

As someone else has suggested, there are additional inhalers available that have a different type of medication and we call this group LAMA. Spiriva is one example. The medication relaxes the lungs in a different way to the long acting bronchodilator in Fostair. But the treatment is in addition to the Fostair type inhaler.

I've taken Montelukast for a good many years now, apart from vivid dreams occasionally, I don't have any other side effects. And before I started Montelukast, I had 2 different periods of depression/anxiety, so the treatment hasn't resurrected those symptoms. Montelukast doesn't work for everyone, but you'll know within a month whether it's having a positive effect on your asthma control.

The side effects from Fostair may be due to low potassium; all combination inhalers can affect potassium levels in some and this can be addressed by eating a potassium rich diet. The patient leaflet explains this, but it doesn't clarify the symptoms of low potassium, which are shakes, tremors and palpitations (low potassium affects muscle). Most side effects settle after a while, but talk to your doctor if they don't.

Have a chat with the Asthma UK nurses on the helpline about your current treatment and symptoms and they can suggest the conversation that you should be having with your doctor or asthma nurse, in terms of treatment. The helpline is open Mon to Fri, office hours, on 0300 222 5800.

And definitely follow up with a treatment review with your doctor or asthma nurse, as the current treatment doesn't appear to be working as sufficiently well for you.

47mum profile image
47mum in reply toPoobah

Thank you so much! Xx

Ladypig8 profile image
Ladypig8 in reply toPoobah

I did not know this about potassium! Thanks!

PaulRosedene profile image
PaulRosedene

I'm on Trimbow and Montelukast. But I don't know how they decide who is on which medications. Montelukast may give me vivid dreams, but otherwise fine with me.

Teddid profile image
Teddid

Been on montelukast for years. Take mine in the morning( agreed with respiratory nurse)

Taking it in the evening appeared to cause unpleasant dreams.

I think it's wise to try things for yourself and see how you get on.

I have been on it for a very long time.

DannyQ profile image
DannyQ

Hi, I've been on Montelukast for about 8 months and had no sideffects, i will add that it has been a game changer for me, for the first time I've able to slow breath when running which is a first in my life.I would definitely advise you to give it a go.

Hope this helps

47mum profile image
47mum

thank you so much x

LadyBumblebee profile image
LadyBumblebee

hi 47mum it might be an idea to tell your asthma nurse of these side effects with your inhaler. Where as it might be good to cough up it can also be a symptom of being sensitive to that particular inhaler. 2019 I was put on flutiform 125/5 inhaler and had very similar side effects. I was told to keep going which I did but ended up coughing up big green balls which ended very badly I was hospitalised strong antibiotics ciprofloxacin500 and inhaler was then changed to duoresp 320/9 I think the type of ingredients are a different and it worked a whole lot better for me. Also I do take montelukast which I really do feel a difference with and carbocistine if my coughing becomes a bit wet but stuck in the lungs because it helps to cough it up. I wish you luck and see an end to those awful symptoms xx

Smurf2841 profile image
Smurf2841

I've only recently been diagnosed with asthma & bronchiectasis after having a terrible "cough" for 11 years. Now on fostair 200/6 & montelukast & the montelukast has been an absolute game changer. The cough went the day I started taking it, and no side effects for me.

Ladypig8 profile image
Ladypig8

Montelukast was a game changer for me, been on it for quite a few years, I’ve not had any side effects - if I miss a dose I feel it the next day with worsening asthma symptoms.

Butterfly2honey profile image
Butterfly2honey

I’m on Montelukast and I haven’t had any problems. The only inhale that I’ve never had the shakes from is Spirival Respimat, all of the other that I’ve had in the past and even Fostair 200 gives me the shakes.

I forgot to say have you asked your GP to send you to see a consultant for your asthma as they will be able to do more test and even prescribe different inhalers etc.

I had a cough for over 18 months and I kept being told by the asthma nurse that I needed to go on to steroids permanently which I refused to after they spoke with my GP the referred me to a specialist who did lots of tests X-rays/ct scan of my sinuses and my chest/breathing tests and blood tests. He found out that id developed a hiatus hernia from all of the coughing too.

I also constantly take Fexofenadine for my allergies you may find that you need some type of antihistamines as well.

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