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Fast forward to Spring this year, we had a child who was withdrawn, depressed, easily frustrated and frequently having huge outbursts of anger, some of which ended in them hurting themselves.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

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.

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.

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.

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.

Thanks @SardinesOnGingerbread I really was just trying to raise awareness based on our experiences and, as I stated, I wasn’t medicine bashing or saying that asthma shouldn’t be taken very seriously, I’m glad this medication works for some, I was just trying to highlight something I wish we had highlighted to us 4 years ago (and yes, I’m still upset with myself for not fully investigating it when it was initially prescribed, lesson learnt the hard way!)