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Fast forward to Spring this year, we had a child who was withdrawn, depressed, easily frustrated and frequently having huge outbursts of anger, some of which ended in them hurting themselves.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

Yeah mine has been on it for 4 years so far and no plans to take her off it as it’s been an absolute godsend.

@Montelukastwarning I looked it up and was very wary of starting DD on it. We were lucky it didn’t seem to have those side effects but it definitely should be discussed a lot more as it was never pointed out to me.

Thanks for taking the time to share this. I was offered this medication and you’ve affirmed my reasons for being cautious. Best wishes for your son’s continued recovery.

My DD was on it for years. Her behaviour gradually got worse and worse, she became reclusive and grumpy. School described her as regularly lying on the floor and saying "no". She has a learning disability so it's always a bit harder to judge what's bothering her.

We found out about the potential behavioural/psychological side effects, I think in a Guardian article. We decided to take her off it, it wasn't an easy decision.

It took a few months, but she soon returned to the lovely, happy, child we had known. School commented on the change to her behaviour, how she was now smiling and happy to see people and engage.

The GP, asthma nurse and her resp consultant all supported our decision to stop the medication.

Interestingly, I've had it pushed on me in the past year. I've refused on the basis that I have a history of depression and suicidal ideation. One consultant was really rude to me about it - basically saying I was determined not to be cured of my allergic asthma.

www.theguardian.com/society/article/2024/may/04/warning-over-asthma-drug-after-500-neuropsychiatric-reactions-reported-in-young-children

ASD teen has been on it for about 8 years, maybe more. No problems with it and no more asthma issues.

Yabu. I would rather take it than die of an asthma attack. Stop scaremongering.

It’s not scaremongering. Asthma is dangerous that’s a given. So is depression. For some of us it isn’t the wonder drug we’d hoped. It made my asthma better, it made my mental health worse. Warning people to be careful and aware isn’t saying don’t take it.
My asthma is under control at the moment anyway. Now I’ve stopped the Montelukast my mental health is too. It seems not all general practitioners are taking the contra indications seriously.

My family was all but destroyed by montelukast. It’s not scaremongering to warn other parents about it so they can at least have a choice whether to risk it, and to carefully observe their child.

Do not underestimate the damage this drug can do. It might be rare (thankfully), but the trail of destruction it can leave is awful.

We haven’t had any issues but I read some pretty alarming stuff when researching it. I don’t think it’s scaremongering at all, even though it was life changing in a positive way for us. (No hospital admissions since she started it).

Absolutely not scaremongering.
My DS was on it for a few years from the age of 5. It controlled his asthma but he had horrific increasing side effects; nightmares, anxiety, bedwetting, aggression, suicidal thoughts.
The doctors did not believe us, the asthma nurse refused to see him as I stopped his medication and insisted we went to see the Paediatrician as we were not following medical advice.
We walked in and the paediatrician was Australian and was really well informed about the drug and side effects. It now has it's black box warning. Absolutely awful experience with it and when there are side effects they don't stop simply by stopping the drug.

Every single medication has side effects.
You cannot predict how someone's physiology is going to react to a certain drug.
Children die from asthma attacks every day and if you didn't have drugs like montelukest more children would have died.

Nobody is denying that! Just warning people to look out. For some of us (and some children) it isn’t the miracle drug we were hoping for.

Montelukast is one of (if not the) biggest revenue makers for pharmaceutical companies, and yes it’s been life saving for many people, not just children.

Given the severity of the side effects and the fact that for some (including my son) they are permanent, you’d assume that they’d want to fund some research into why this happens, who it’s happening to, and how to prevent it. But like similar sized corporations they put more effort into silencing journalists who threaten to expose it all - sure there are dribs and drabs of info that gets out, but nothing like the amount of evidence journalists have! To my knowledge it’s still unfunded parent groups still doing the bulk of the work.

The side effects do exist for some people but for others it's a wonder drug. If you are anxious about taking it for giving it to a child then talk to your doctor about a short trial. Symptoms go away as soon as you come off it so there isn't much risk.

I've been on it for 10 years now and I went from uncontrolled asthma and regular attacks to being fine even if I forget to take my preventer inhalers (though I try not to!). I've never needed steroids outside of a respiratory infection since starting it.

As a child I watched my best friend die of an asthma attack at her own 10th birthday party. This drug could have saved her. Yes there are some risks but if they don't affect you/your child don't let it put you off. The risks of an asthma attack are far worse than some nightmares on a short trial and you might not even get them.

It’s not just nightmares! People don’t say this stuff for nothing. I started self-harming again. Quite badly. Others here have mentioned suicidal ideation.
It’s not the case that people are saying don’t take a drug because you’ll have nightmares. The side effects are serious. You need to be prepared for them and monitor closely so that if it’s not the best for you, you realise in time.
In my own case, with my history, I don’t believe I should have been prescribed it.
But I wholeheartedly agree that asthma is very serious and should be taken seriously.

Thank you for sharing

its a reminder to always be aware of side affects of medication and check regularly on the literature supplied in the box & online to remind yourself

I was prescribed Montelukast and trialed it, it didn’t work and I was moved to a different drug that has worked marvellously, since been on it for 8 years

100%. I wouldn’t let my children take any medication without being fully aware of the risks and potential side effects beforehand.

“Symptoms go away as soon as you come off it so there isn't much risk.”

Not all the time. True for most families it does the trick, but for some it’s life changing. We’re nearly 15 years on, the side effects very much did not go away.

What did they move you to ?

The Doctors have wanted to prescribe it to my DS several times but I've always refused. He has ADHD and has been suicidal in the past and there was no way I was going to risk it.

My asd teen was prescribed it in 2010 at 4yra old, and stayed on it for over a decade without issue.

If you do an advance search on here we've certainly discussed this issue before as there used to be a long running parents of asthmatic kids thread for support.

Sorry to all whose dc have experienced side effects, it was a very useful addition to our regime luckily.

We were fully informed about potential side effects when it was prescribed for DS and I read the information provided in the pack fully to make sure they I understood.

He had none of the potential side effects and it was life changing.

We all need to take responsibility for understanding what we are taking, or giving to our Dc and make sure that we are making fully informed choices.