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

I just wanted to say how much I appreciated the balanced and measured way you shared your experience and thoughts. It felt really responsibly shared. Hope that doesn't feel patronising as it isn't meant to be. Just genuinely liked the way you did that.

Many of these stories echo my son’s experience on Montelukast. The challenge is that young children often cannot articulate what they are experiencing, so much of this can go unseen. My son became very angry and talked about how his life wasn’t worth living, aged 8. I had no idea this was related to Montelukast until a friend shared correspondence from the uk health secretary with the family of a child who had killed themselves while taking this drug. Once you look there is a lot of horrifying information online but when my son was prescribed the drug this wasn’t included in the side effects (it is now). I was told by our GP that this was a completely harmless drug. When the FDA updated the guidance no one from the GP surgery or Pharmacy shared that information with current users so we missed it. I took him off Montelukast once we realised what was happening and symptoms abated but I don’t think they’ve completely disappeared and I read that some of these side effects permanently alter brains. Of course, this is a wonderful drug for some and a life saver for many with no side effects - but in our case it was not. Incidentally, if you’ve read or watched Nine Perfect Strangers, while not named directly many believe that this is the asthma drug that impacted one of the families. A work of fiction but unfortunately too true for some.

DS2 was on it for over 10yrs with no problems whatsoever. Prior to that he was in and out of hospital on a 4-6 week basis.

My now 22year old son was prescribed this due to terrible night time asthma at age 10. He had a few tummy issues for first four or so weeks but once he was used to medication no further problems. He was diagnosed symptomic asthma free a year later. He had no need for any inhaler, preventative or otherwise until a serious Covid infection 4 years ago. It was an absolute life saver for my son.

I was prescribed this in 2021 after recovering, mostly, from Covid. For me it has been a miracle, no side effects and no asthma symptoms so long as I use it and my inhaler. I was warned about potential side effects and I read the leaflet.

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.

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.

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.

What did they move you to ?

“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.

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

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

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

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.

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.

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.

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.

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.

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.

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).

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.

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.

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

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