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Original poster

...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

OP posts:
Allihearischasemarshallskye · 04/03/2020 22:06

My 2 year old has just been prescribed this medication for recurring viral wheeze , I have been afraid to start him on it after some online research , I'm 50/50 as what to do.

Changeofname79 · 04/03/2020 22:09

My son (13) takes this every day so this is really worrying. We were warned re mental health side effects and to keep an eye on him. It works really well for him

Original poster
Hmmmmminteresting · 04/03/2020 22:10

@Allihear my son was 18 months when he was on it. He was on it for 2 months before he was hospitalised due to how worried doctors were about his change. Everything changed, appetite, sleep, screaming constantly, crying all the time. Appearing to be in constant pain. NOT basic toddler behaviour, he was like a possessed child. He went from being so happy to so sad. It took 24hrs in hospital till one paediatrician
suddenly realised what medication he was on. Taken off immediately and the majority of the issues stopped but hes never been the same child since.

OP posts:
Babymamamama · 04/03/2020 22:10

Thanks for sharing this information. I'm going to cease using this on DD.

CumbiaVillera · 04/03/2020 22:11

Bloody hell. DS takes this every day. Thank you for passing on.

Vittoriosa · 04/03/2020 22:13

My 7 year old son has been on this for around 6 months. I was not warned about these side effects and I am pretty horrified after reading that. My son’s behaviour has changed and he has also started sleepwalking. Stopping this medicine immediately

ginandbearit · 04/03/2020 22:15

I'm a 60 yr old and was put on this a couple of years ago and I'm pretty sure it was responsible for a crashing depression , sadness , unexplained tearfulness and general misery

Iveneverwonanoscar · 04/03/2020 22:19

Thanks for the warning. My 3 yr old has been on this on and off for a while. I'm stopping it immediately.

FourFlapjacksPlease · 04/03/2020 22:19

This drug has changed my son from a child who was hospitalised with pneumonia every couple of months to a healthy child with brilliantly controlled asthma. Nothing else has worked as well for him and he has had no side effects. I know that this is not the case for every child but I'm not entirely sure he'd still be here if he hadn't been prescribed Montelukast. I agree that it's important to know about the side effects but I think you need balance the risk for your child, and the majority of children take this drug with no issues.

Changedmyname84 · 04/03/2020 22:21

About 6 years ago my youngest was in and out of hospital with viral wheeze.

I had privately spoken to a Respiratory Consultant he (by chance) ended up being her NHS doctor when she was admitted to A&E for the fourth time. As he knew the case he kept us on with him on the NHS. An absolute god send. He instead prescribed a steroid inhaler - he wasn’t keen on using montelukast. DC now outgrown the wheeze I would say was DC steroid inhaler for 2 years everyday and then up to the age of 6 on reduced amounts - and then used only over the winter season.

Now aged 8 we occasionally use the blue inhaler and DC been off any steroid inhaler for 2 years. His thoughts were better to used steroids than use motelukast - I do believe though 6 years ago it was newer and less prescribed than now as it was costly too.

Changedmyname84 · 04/03/2020 22:22

Not sure you should stop meds without advice - you may need something else.

cookiemonster5 · 04/03/2020 22:26

Please please please don't stop medication without talking to a health professional! Especially when it comes to children.

Original poster
Hmmmmminteresting · 04/03/2020 22:27

FourFlapJacks theres no doubt in my mind that this drug works for what it's intended, otherwise it wouldnt still be available. The worry is that in the UK health care providers seem oblivious to the side effects, and we are not talking your basic side effects here that u see in all leaflets.
It took us 2 months to make the link in the change in behaviour and personality because we had no idea how severe the side effects were, because gps dont appear to know either. Thankfully this is now being recognised and taken seriously. It's worth noting (I've done a lot of research) that children can be on this medication or years and seem 'fine'. The side effects often come out during teens by which point it's hard to change a brain that's been subjected to this.
I hope your son is better, it sounds like ours were prescribed it for very similar reasons.

OP posts:
FannyFifer · 04/03/2020 22:29

My son had horrific side effects with this when he was around 5.

noeyedeer · 04/03/2020 22:30

Light bulb moment for me reading this. DS had it lots when younger and went from a happy chap to screaming meltdowns. It's probably 4 years since he last had it, and only now is getting 'better'. Montelukast never seemed to do any real good, but a steroid inhaler makes a difference. On the other hand, I know of other kids where Montelukast has been a miracle for their asthma.

JamesNesbittsBrows · 04/03/2020 22:32

Dd was on this for a few months. Did nothing for symptoms or mood.
Thank goodness she stopped it as I've heard awful things since.

Gibble1 · 04/03/2020 22:32

Oh no! My DS has been on it for a couple of years and is now 16. He has weaned off it now and I don’t think he takes it at all any more but I wonder if it’s what has - well no not caused but contributed maybe- to his complete lack of effort in anything at all?
I’m a HCP and had never heard of this side effect. Very worried.

EmmiJay · 04/03/2020 22:34

DD has been prescribed this. I was advised to give it to her on the first day of any cold she developed (visible symptoms) and she has only been admitted once in 10 months for a viral wheeze (usually every 2/3 months she'd get really poorly). Amazingly, the last cold she had didn't even go to her chest like it usually does which is a massive relief. No side effects that I've spotted (shes autistic, boarderline high functioning) so its easier for me to spot a difference in her behaviour. Medication works so differently for everyone but its very helpful that you raise this because you just do not know!

Waveysnail · 04/03/2020 22:36

Mine was prescribed by a specialist? Is this no always the case?

Original poster
Hmmmmminteresting · 04/03/2020 22:40

Waveysnail mine was prescribed by a general paediatrician at hospital but he had no idea of the side effects. We then started visiting various gps at our surgery due to the side effects (as we hadn't made a link). They all knew he was on it and not one realised that it affected mental health. I've since had a letter from practice manager to say all gps there have been updated and letters have been sent to all patients currently prescribed it asking them to be aware of the side effects and book a review if they felt necessary, so couldn't really ask for more from them.

OP posts:
kathmacc · 04/03/2020 22:42

My son was 8years old when started on this drug 11 years ago by his consultant at St Mary’s Paddington. From being a breathless coughing child he is now running at county level and I can’t remember when he last used his inhaler. He took the drug continuously for 3 years and then just for 2 week courses when he had a temperature etc. - an absolute positive story here! He hasn’t had it for 5 years or needed it.

SeenYourArse · 04/03/2020 22:42

My son took this for around a year from age 18 months, he’s not the same little boy anymore he’s anxious, has mood swings, tells me he’s sad but can’t say why and gets so angry all the time at the slightest things he’s almost 4 now. I wish we’d never given him it but had no idea the possible side effects at the time

Hearthside · 04/03/2020 22:43

I was put on this for my asthma .I didn't get on with it at all.Made my migraines worse and just made me feel really unwell .The asthma nurse did say it doesn't work for everyone .

LemonFrenzy · 04/03/2020 22:52

My dc took this for a while and then I noticed on the side affects it could affect sleep. GP had recommended it be taken at night. My was having problems sleeping and so I asked for an alternative which turned out to be a different type of inhaler. I wondered if it was to do with coat.

CocoLoco87 · 04/03/2020 22:52

We had DS put on it when he was... maybe 3 years old. As it's an evening medication, we started realising that his behaviour was absolutely awful during bedtime routine. And he's usually a lovely boy. We stopped the montelukast and his behaviour changed virtually overnight.

Now we just use it on occasion if he starts up a cough. We found the medication does actually treat his asthma, but the side effects for his behaviour were awful. He was quite wild and uncontrollable.