AIBU to warn you all about asthma medication Montelukast (Singlair)

[Montelukastwarning]

‼️ Asthma Medication Warning ‼️ Montelukast (Singulair) ‼️

Just to note: this is based on our experience and research/ advice I believe to be from reputable sources (links provided) but please speak to your healthcare provider and do your own research. Asthma should always be taken seriously.

Over 4 years ago our child was prescribed Montelukast after another hospitalisation following an exacerbation of asthma symptoms. At the time of prescribing we were warned, on the way out the door, that “this medication could cause nightmares for some children”. My child was put under consultant care for their asthma and took this medication daily as prescribed.

Fast forward to Spring this year, we had a child who was withdrawn, depressed, easily frustrated and frequently having huge outbursts of anger, some of which ended in them hurting themselves. School reported a child who was academically where they needed to be but who was having issues concentrating and having huge problems regulating their mood. They did put steps in place to help but we had reached a point where there wasn’t anymore support they could offer.

We went to the GP and I tried my hardest not to cry whilst I listened to my 8 year old child tell a GP they wanted to do themself serious harm. The GP sent me a link to a website which stated at the top “if you have any concerns please contact your GP” 🙄

With little help forthcoming from the NHS we started looking for a private councillor, waitlists in our area ranged from 3-6 months and beyond.

Then, one day, I was revising respiratory function for uni and it occurred to me that I have never looked into the medication we have been administering daily in much detail. What I found was alarming to say the least. The first link was a government warning which included the following:

“The most frequently reported reactions in younger children (up to and including 12 years old) were aggression, nightmares and anxiety”

and included a link to a Yellow Card Scheme for reporting issues with medication.

I looked at further studies, research and anecdotal evidence all of which highlighted the issues that many people have experienced whilst on this drug.

Although not fully understood it is thought that Montelukast affect neurotransmitters in the brain, like serotonin and dopamine, which play a role in mood regulation. Additionally, it may increase blood-brain barrier permeability, allowing more of the drug to reach the brain and potentially disrupt its normal function.

I’m not blameless. I should have read the enclosed information leaflet. I should have looked online when we were first given those pills. I should have highlighted these issues at his 6 monthly reviews with the asthma consultant however, because we are there to discuss asthma, I have never thought to raise the behaviour and mood issues that came to a head in the Spring. BUT how many of us question what we are given and told will make us “better”? (I’m definitely not medication bashing, I think modern medicine is wonderful usually!)

We had a pre-scheduled review a few days after this realisation and we sat in front of a consultant who admitted he never asks his patients or their parents about behaviour or mood, he said that from that day on he was going to start asking.

We stopped the medication that day, with the consultant’s support. There was a withdrawal period (which potentially was even worse than the months before it), but slowly our child has come back to us. The difference now is night and day!

I’m not usually one to jump on the social media soapbox but I wish I had known about this before starting the medication so I just wanted to provide our experience and some supporting evidence to be spread in case there’s another family out there feeling lost like we were.

Link:
Montelukast (Singulair): reminder of the risk of neuropsychiatric reactions
www.gov.uk/drug-safety-update/montelukast-reminder-of-the-risk-of-neuropsychiatric-reactions

More information:
www.asthmaandlung.org.uk/symptoms-tests-treatments/treatments/montelukast

The Yellow Card Scheme for reporting issues with a medication:
yellowcard.mhra.gov.uk

#asthma #montelukast #singulair #medication #warning #children #anxiety #NHS #asthmaandlunguk

nc as I’ve shared this from my facebook

I was under the impression that montelukast was for short term use only due to the above issues

I was very hesitant about my child starting Montelukast because I’d researched and read about the side effects, but we decided to give it a try as she was struggling so much with her asthma. It’s been nothing but positive for her, she’s been taking it for 5 years now and we’ve gone from her school attendance being 85% to close to 100%.
It’s always important to read about the potential side effects of a medication before commencing it, and to weigh up the positives vs the negatives.

Useful to know,thank you. I've been taking montelulast for over a year without any problems but if it's good to keep this in mind.

I'm glad your son is doing so much better x

@Zeb81 not in our experience. 4 years (all under a consultant with regular appointments) with an increase in dosage in year 3

I’ve been aware of the potential issues, but I think many doctors will not be. It would be typical to assume that an asthma drug wouldn’t cause psychiatric side effects, unless you have the curiosity and time to actually look.

@MereNoelle I wish I had done the research, I remember the night we were discharged from hospital, we waited 4 hours for the medication to be dispensed before we were discharged, it was 11pm and we were told as a side note about potential nightmares as they held the door open for us on the way out. A very hard lesson learnt, hopefully with no ongoing issues. I don’t think the behaviour/ mood issues started straight away but the only thing that has changed in the last couple of months is the discontinuation of Montelukast. I’m glad your daughter has seen such an improvement on it, it was suggested to us that issues can be exacerbated by hormones, we just want to raise awareness.

@L00pyLou I've also since learnt about mood issues being brought on by combining this with other medications and even some foods, definitely something to keep in mind. I hope it continues to work well for you.

My son was prescribed it and I took him off it after a two weeks, he's got autism and can struggle with his mental health anyway. He was having a bad time and I don't know if it was related but I couldn't risk it. He's got a combination inhaler now which has completely eliminated his symptoms

But about 6 months later, my asthma nurse suggested I take it and I've been on it for 6months + with 0 side effects and

I do think they should discuss he risks more though, not sure how I knew to be so on the ball with it with my son

We had a similar experience with our son when he was 10 when he had extremely bad hayfever but with prednisone. He went from being a happy boy to having horrendous nightmares and crying all the time. Needless to say he stopped taking it after 2 days.

Wow. I had no idea

mini blondes 8 has been on this for just over a month , maybe 6w

so far no issues but useful to know,thank you.

My DC was prescribed this, I did research before giving it to him but a lot of his behaviour is similar to the side effects anyway...he was doing well but started getting stomach aches so we stopped it immediately. I now only give it to him for three days at a time max of his asthma symptoms get worse.

I was prescribed this about 3 years ago, within a week I was, what I can only describe as psychotic, I was hallucinating, I had anger and very snappy and I would say it defiantly effected my mental health short term

We were told nearly 20 years ago about those side effects with Montelukast and prednisone. DS was on both for his asthma for a very short time and the latter definitely affected his behaviour, so it was strictly to get him over the worst of his asthma episodes. It’s concerning that not all medical professionals make the side effects clear.

I’ve been aware of the potential issues, but I think many doctors will not be.

When they look up montelukast in the British National Formulary, they will see the following right under the list of dosages:

Important safety information
Important safety information For montelukast
MHRA/CHM advice: Montelukast (Singulair®): reminder of the risk of neuropsychiatric reactions (September 2019)
Healthcare professionals are advised to be alert for neuropsychiatric reactions, including speech impairment and obsessive-compulsive symptoms, in adults, adolescents, and children taking montelukast. Patients should be advised to read the list of neuropsychiatric reactions in the information leaflet and seek immediate medical attention if they occur.
For further details, see: https://www.gov.uk/drug-safety-update/montelukast-singulair-reminder-of-the-risk-of-neuropsychiatric-reactions.
MHRA/CHM advice: Montelukast: reminder of the risk of neuropsychiatric reactions (April 2024)
Following a review of the available evidence, warnings about the risk of neuropsychiatric reactions associated with montelukast have been strengthened and highlighted in product literature to increase awareness. Such reactions include new or worsening changes in mood, sleep, or behaviour (e.g. nightmares, aggression, anxiety, depression, or thoughts of self-injury), and have been reported in adults, adolescents, and children. In addition to advice issued in 2019, healthcare professionals are advised to discontinue montelukast in patients who develop new or worsening neuropsychiatric symptoms.
The MHRA has produced videos to support this advice—guidance for healthcare professionals is available at: and guidance for patients, parents, and carers is available at: .
For further details, see: https://www.gov.uk/drug-safety-update/montelukast-reminder-of-the-risk-of-neuropsychiatric-reactions.

There is zero excuse for any doctor (or anyone else) prescribing montelukast in the UK not to be aware of this.

It also says the following further down:

Patient and carer advice
Administration
Patients or carers should be given advice on how to administer montelukast granules.
Risk of neuropsychiatric reactions
Patients and carers should be advised to seek medical attention if changes in behaviour occur—see also Important safety information.
Medicines for Children leaflet: Montelukast for asthma
In children:
https://www.medicinesforchildren.org.uk/medicines/montelukast-for-asthma/

It has been pushed on us numerous times and we’ve been told “only mild nightmares”. But I did my own research. There are some harrowing stories. Suicide in teenagers and young children. It has a black box warning in the US and I believe the UK gov has recently updated its guidance but of course our consultant didn’t even know about that! I won’t ever let me child touch the stuff

I’m sure (I hope) the vast majority of those who prescribe montelukast will be aware. However I think lots of those working in mental health won’t have a clue. You tend to look at the BNF for drugs you are prescribing (if you are not sure), but not systematically check all the others on an existing prescription.

I don't doubt for 1 second you have taken the advice given by medical professionals and really they should be able to be trusted.
We were advised very short term use for my kid, but asthma is a killer and not all asthma and medication is the same, it's maybe this is the one your kid needed to stay alive, my boy was resuscitated and I wish that on no-one.
It seems that us parents need to become experts in our own kids medical complexity but they have let you down not monitoring his side effects. I hope he gets better soon and the docs take his long term health seriously

OMG - I did not know this - DD was prescribed this medication and this makes so much sense now - she’s was older than your DD.

Fuck me!

Oh wow! My son started on this about this time last year and at his last parents evening a couple of weeks ago, they said he behaviour since Christmas has been terrible, no concentration, acting up etc.. I need to look further into this! He’s almost 10 and we’ve never had any issues with his behaviour at home or school until the last few months… might just be his age but I’m concerned having read this!

It is very disappointing that the Consultant didn't enquire about adverse effects when reviewing your child or properly inform you beforehand as potential neuropsychiatric side effects are very well known and clearly described in the product information leaflet in the box. My DS has been taking it periodically for over 15 years now and I think I have always known so it's certainly not new information. A paediatric consultant who presumably prescribes it regularly really has no excuse for not being aware of this. I'm sorry you had this awful experience.
However, I think it is important to stress that many people, my DS included, don't get these or indeed any other significant side effects and it can be an absolute game changer for people with asthma that canot be well controlled with inhalers. Without montelukast my DS needed large doses of salbutamol and inhaled steroids, and fairly frequent courses of oral steroids which of course have their own side effects, including potential effects on mental health. And even then his asthma is not very well controlled which obviously is not good for him either. On montelukast he takes his preventer twice a day, rarely needs his reliever and lives a perfectly normal life including playing two sports at a reasonably high level.
You are absolutely right that people need to be aware of these potential serious adverse effects then they know what to do if they or their child are unfortunate enough to develop them, but people should not be afraid to try the drug if it is needed and shouldn't stop it without medical advice. According to NHS England three people die every day from asthma in this country and a potentially life threatening asthma attack occurs every 10 seconds, many of which are probably avoidable. Getting the right treatment and taking it correctly is really important.

YANBU.
I’ve namechanged because this could be outing.

My son developed difficult to control asthma when he was 6, 14 years ago. He was put on montelukast which felt miraculous.
After 12 weeks he went from being sweet natured and confident to being angry and violent all the time, this continued after we took him off monte (against the wishes of the dr, as there were no indications at the time to suggest monte was the problem).

After coming off my son had some withdrawal symptoms and slept a lot, but the issues continued. GP said it was a parenting issue.

I did some digging and searching, and found a parent action group which I joined, and learned so many horror stories about monte and the wholesale denial of monte being the issue.

Here’s where it starts to sound like a conspiracy theory. At around that time someone joined the group who knew an awful lot about the process of having monte approved by the FDA, and pointed the group to various documents showing the projected value of paediatric montelukast, how the trial was pushed through quicker than paed trials were meant to take and other info that armed the group enough to have these side effects added to the information leaflets. The information is no longer searchable.

The parent group worked so hard to try to find out what was happening and to publicise the issues. At one point an Australian journalist had several cases (including my son) and was poised to release all the gathered evidence, but shortly after withdrew contact completely.

Since then every 3-4 years something crops up in the news (last time I believe was before Christmas) then quietly disappears.

I truly believe that one day someone will be brave enough to crack open this can of worms. Maybe they’ll make a film about it, like they did Radon, Teflon, Erin Brokovich. Maybe there’ll be adverts all over SM like there currently are looking for those harmed by Johnson & Johnson.

In the meantime I’d advise people to approach it with great caution. I know several people who had no affects at all. Whilst most who have these side effects recover once they’re off them, but some, like my son, are affected by them for a long time (14 years and counting). My family all but fell apart, and every single one of us has ongoing problems because of the trauma.

We didn’t have any clue, we saw a consultant at least 2 times a year, we saw a respiratory nurse at least 4 times, we sat in front of a GP with an 8 year old who said they wanted to do serious harm to themselves and no one raised it.

@MrsAvocet that is exactly why I stated that in my opening paragraph, I’m purely sharing this for others who are unaware as we were.

I have this and even as an adult I was only told the positives then once I'd agreed a sudden side comment that it can cause nightmares, messed up sleep and mental health issues.

I'm supposed to be on it longterm but after about 6 months I stopped and haven't fessed up yet to GP, I didn't have terrible side effects but something didn't sit well about it

I had no idea it was being prescribed to children though!

The FDA gave a warning a few years before my son was on it, but most GPs had no idea - DS’s didn’t, neither did the paediatrician he saw, or the asthma nurse he saw on a regular basis.

It was a few years after ds had it that information was more widely available.