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...to tell you this about Montelukast (Singulair)

75 replies

Hmmmmminteresting · 04/03/2020 21:59

I've posted on here before about this drug (used to treat Asthma and allergies predominantly). We have had a very bad experience with it and I wanted to raise awareness of the awful side effects.
I got a lot of the "well I'm alright Jack" type comments. But I also got a lot of "Oh my god. Everything has just suddenly made sense" messages as people were realising that their / their childs mental health, anxiety, depression etc was potentially down to this. That's all I wanted to do.
Well good news, in the USA today the FDA have announced they're going to be putting a black box warning on the outer packet to warn of the side effects, since their studies on rats have realised that this medicine does actually cross into the brain, therefore almost having the ability to 'rewire' certain parts. The damage it does is often irreversible.

Here is hoping the UK follow suit very soon.

www.fda.gov/drugs/drug-safety-and-availability/fda-requires-boxed-warning-about-serious-mental-health-side-effects-asthma-and-allergy-drug?fbclid=IwAR1h6IhdVXz0SffV95dNyms5RE-Az9UIAXk-MuRDEBXN3vLtRRGYnBLAls4

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LemonFrenzy · 04/03/2020 22:52

cost not coat!

PatchworkElmer · 04/03/2020 22:58

DS was put on this last year, aged 2. I took him off it after a week as I was so concerned about the side effects.

SquashedFlyBiscuit · 04/03/2020 23:01

My daughter was on this for a while at 6/7ish. It absolutely worked.... but she was wetting the bed Every Single Night when on it. We only realised it was the drug when we went away and forgot to take it with us!!!!!

(Out of interest does inhaled steroids do anything similar depression wise? I'd love to have something to blame :)....)

DontBe · 04/03/2020 23:09

Please don’t just stop giving your children prescribed medication. Discuss it with your GP or consultant first!

Milicentbystander72 · 04/03/2020 23:27

My ds has been on Montelukast since he was 3. He was constantly in and out of A&E and was very ill pretty much all the time. For us, this medicine was where everything started to go right for us.

He's 13 now, healthy, happy and well controlled asthma.

I'm sorry to hear some people have had a nightmare with it but I'd hate to see some people take their children off it against medical advice when no side effects have been apparent yet.

I honestly don't think we could have coped without it.

Milicentbystander72 · 04/03/2020 23:28

Just to add my asthma got worse 2 years ago and the gp prescribed it for me too. I've had no issues either, and much better asthma.

SquashedFlyBiscuit · 04/03/2020 23:33

Gosh yes we went back to the asthma nirse and changed meds. Please dont anyone just stop.

SquashedFlyBiscuit · 04/03/2020 23:33

It did keep up out of hospital!

WorriedMam2020 · 04/03/2020 23:37

I used this for my DS when he was under a year. Got rid of viral wheeze brilliantly but after research into the mental health side effects - well documented in adults but not in children - I immediately stopped and refused all offers of it. He ended up in ICU and has since been on steroid inhaler which I am happier with as it has been used for 60+ years with well known side effects.

They seem to be dishing out Montelukast without any consideration or mention of the MH side effects and risks. With young people have so many MH issues these days I think it is a mistake to use this!

WorriedMam2020 · 04/03/2020 23:39

This reply has been deleted

Message withdrawn at poster's request.

CrocodilesCry · 04/03/2020 23:40

The thing is that asthma can and does kill.
For any medication you need to be aware of side effects. There will always be patients who suffer with side effects and it’s sensible for parents and patients to be aware of them.
But please for goodness sake don’t stop taking this or any medication without your doctor’s advice. Especially with asthma.

WorriedMam2020 · 04/03/2020 23:40

Good to know I am not the only one who thought it wasn’t worth the risk 👍

aLilNonnyMouse · 04/03/2020 23:42

Given the alternative is the inability to breathe, I'll continue taking it. I've watched someone close to me die from an asthma attack and it was horrific to watch.

To anyone reading this: please please please don't have a knee-jerk reaction and pull your kid off a life saving medication without taking to a doctor first.

BalanchineBallet · 04/03/2020 23:46

Asthma can be lethal. It is lethal, in hundreds of a people every year. Please will nobody stop their child’s medication without consulting their healthcare professional.

Hmmmmminteresting · 04/03/2020 23:47

Alilnonny the alternative being an inability to breathe is not the case for everyone.
I have met people who were on it for mild hayfever and others who may or may not have asthma but were given the meds to take daily as a precaution in case they develop asthma eventually.
The advice is weigh up the benefits of needing the medication vs the side effects.

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BalanchineBallet · 04/03/2020 23:48

@Babymamamama @Vittoriosa @Iveneverwonanoscar

Please do not just stop your child’s medication. Talk to your doctors. Don’t pull a life saving medicine from a child like that without professional qualified advice.

Lightofthephoenix · 04/03/2020 23:49

@Hmmmmminteresting I'm glad you re posted, i could not find the original thread.

I stopped my DC Montelukast the day you originally posted and I'm so happy to say, we have our old DC back again, the smiles are back, no nightmares, no crying over nothing, no more self harming, none of it.

I did take a couple of months for all the side effects to go but we noticed an improvement after a few days.

Thank you so much for posting when you did, I dread to think how much worse things could of got otherwise.

Apirateslifeforme · 04/03/2020 23:51

Thank you for passing this on. It has made a lot of things click into place.
I will say that I had an issue with coughing up blood for around 9 months then was given montelukast, the asthma wonder drug, that did pretty much clear up all coughing up of blood.
But coincidentally I hot the floor mood wise, what was decently controlled anxiety and depression seemed to turn into a raging fire again.
Nobody has told me that it may be down to the montelukast!

I'm so sorry to hear all of these negative experiences with this drug.

BalanchineBallet · 04/03/2020 23:52

@Vittoriosa and @Gibble1

These side effects are listed clearly in the patient leaflet in the package....

Lightofthephoenix · 04/03/2020 23:53

I should add that since then, DC had a couple of hospital stays and we have been told, the asthma diagnosis was totally wrong and DC has something else.
The Montelukast was never even needed in our case.

Hmmmmminteresting · 04/03/2020 23:56

They may be listed inside but every medication comes with a list of side effects. Everyone knows that different meds have different reactions with each individual but this is different. If it wasnt then the FDA would not have taken this step and the UK goverment would not have released this statement a few months back

www.gov.uk/drug-safety-update/montelukast-singulair-reminder-of-the-risk-of-neuropsychiatric-reactions

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BalanchineBallet · 04/03/2020 23:58

@OP

I’m not disagreeing. I’m saying that to say they had no idea at all suggests they haven’t read the leaflet, which I consider to be irresponsible. I do not take or give my child medication I have not read the associated literature about.

Hmmmmminteresting · 04/03/2020 23:58

Lightofthephoenix I am so happy to heat that your dc improved so much! That's amazing! I just cant believe it has to come down to a MN thread to raise awareness I really hope things change soon

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BalanchineBallet · 05/03/2020 00:00

And in fact, the top line of that uk government link for healthcare professionals, reminds the reader to revisit the SmPC and the patient leaflet.

Hmmmmminteresting · 05/03/2020 00:03

Balanchine it was issued after a lot of campaigning because so many HCPs were not aware of the side effects, therefore were not passing the info on to patients or families -even when they were presenting at surgeries with many of the side effects.

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