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Fast forward to Spring this year, we had a child who was withdrawn, depressed, easily frustrated and frequently having huge outbursts of anger, some of which ended in them hurting themselves.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

@jjpollypocket and @Silvertulips please do have a look at Asthma and Lung UK and other information and contact your prescribing healthcare practitioner before making any medication changes and feel free to pm me x

My 11 year old daughter was prescribed it. It was great for the asthma but her mood changed almost immediately. She went from happy and loving to anxious and depressed. I assumed it was teenage hormones, until I read an article in the Guardian by parents who were trying to spread info about it. Their son had ended up tragically committing suicide on it.
I observed for another week. Then one night, she was crying again over nothing. I told her to stop taking the pill. 24 hours later she was back to normal. Never again! She now has a preventative inhaler which works well. Though the montelukast was even better! But not worth it. The difference was so dramatic - I was really shocked.

I’m so sorry you had such a horrendous experience @MonteParent and are still living with the fallout. From what I’ve read from others it sounds like we have been lucky to see a positive change fairly quickly, just so sad we put our son and ourselves through the whole ordeal.

I thought it was well known it can cause mood and personality changes in some people however usually it's only prescribed for extreme asthma where their could be threat to life especially in young children.
Iv taken it for many years and couldn't function or possible live without it

I take mine in morning as then it's doesn't cause sleep issues

I've been on montelukast for just over two years with no issues. It was actually a game changer in how well (alongside my laba inhalers) it helps my asthma. I've actually had a few of those mythical just a colds that people talk about...although if it's a bad dose it still affects asthma.

My asthma nurse and GP were very explicit on side effects and we looked at alternatives but they didn't work and actually exacerbated my asthma when sick. So I bit the bullet and never looked back.

I will say if I take late/before bed I've had bizarrely weird dreams so try to take no later than 7pmish

It's poor that they didn't flag this information especially given how severe the side effects could be.

This has been our experience with our 4 year old, who's been on it for the last year or so. Initially only when he got sick (every other week) because most periods of illness would result in viral wheeze, poor breathing, and an inevitable trip to A&E. DC now sails through most illnesses and only ends up with an A&E visit when there's a chest infection needing antibiotics. We were made aware of the risks before starting and were on the lookout for any changes. Thankfully, we've been lucky and for us it's been a huge positive. I'm so sorry OP for your experience and I'm glad your kiddo is improving now - it must have been a really scary, stressful experience for all of you

My 7 year old started sleepwalking on it and the GP told us to stop immediately.

Yes, I assumed the potential side effects were well known. I wouldn’t have given it to my child without thoroughly researching it. However she was struggling so much with her asthma that we had to try it. It’s been an absolute game changer for her.

We've been prescribed it for our Dd3 but haven't given it to her because of the risk of those side effects. The Dr only mentioned potential night terrors, nothing else. I think I read about the rest somewhere online & then read the leaflet together with DH. I'm sorry your son went through all of that.

I told my asthma nurse about the link to suicidal thoughts when she was pushing me to take it and I said nope absolutely not. She refused to believe me until I showed her information from Australia. She gave me Fostair instead

My 4 year old was prescribed Montelukast by a specialist after always being in and out of hospital with breathing problems. I read up on it before giving it to him as I wanted to know the side effects. He was supposed to have a sachet everyday but we decided to only give it to him when he needs it. I didn't see a reason for him to be having it daily. Thankfully we don't notice a change in behaviour when he does have it, and it has been really helpful when he's struggling with his asthma. Sorry you had a bad experience with it and thank you for raising awareness

Not a child, but taking this medication for my asthma correlated with a depression relapse for me which resulted in several episodes of self harm. I stopped taking it and have been fine. I know correlation does not equal causation but I will not be taking this medication again.

I've been taking it for several years and it's been a game changer n managing my asthma. The pharmacist warned me about the possible isdues described here and told me to contact them if I had any. They called me a few days later to check whether I was suffering any side effects ( I wasn't).

YABU, this medicine saved my son life. Before he went on this he was in hospital every few weeks and was extremely unwell. The results were almost instant when he was prescribed it.
However, the consultant fully informed us of potential side effects. My child did not suffer these. He took the medicine for three years. He is now off it. So sorry your child went through this but just wanted to add a positive.

I was given montelukast as an adult to try and stop some severe allergies I was having, but as someone with bipolar, it made me extremely anxious. That's not a symptom I usually have, so I knew it was the medicine. I still have it for very severe flares but I take it a max of three days when my symptoms are the worst.

There are a lot of things like oral steroids thay affect my mood that mean that I am careful and have an action plan if I need them.

My DS is on it over 4 years,
no.issues afaik, he had frustrating sleep related issues in the past, we went private for tonsillectomy 2 year's ago and it has improved his sleep disturbances by miles.

interesting, thank you! I have not severe asthma and at one point (I think around 2015) my GP prescribed this in a kind of ‘this is new on the market how would you like to try it?’ kind of a way.

I took it for a bit but since my brown inhaler controlled my asthma well I just didn’t bother repeating the prescription.

Later that year I was prescribed prednisone during a chest infection and felt superhuman on it for a few days then had the most insane mental health crash when I came off the 7 day course. Never had MH issues before but was having constant panic attacks, shivering under a blanket. Took me ages to feel mentally well again. I’m alright now, but jeez it was a lot.

We also had problems with Montelukast, DD2 was prescribed it when she was very young for her breathing difficulties and soon after she started taking it she developed night terrors and behaviour that she had never had before. They stopped very quickly after we stopped the medication.

Wonder why if effects some but not others

At the time I was involved with the parent action group there were theories that it was to do with the blood/brain barrier. Some on the group paid privately to have MRIs which showed promising results. What they couldn’t find was whether the drug caused damage or whether a weak barrier was there before.

There were also questions as to whether it was possibly linked to the MTHFR gene, and to something called mast cell activation syndrome (linked (I believe) to other things like EDS, POTs, ASD etc) but to my knowledge no work has been done to try to identify who may be at risk (very happy to be told I’m wrong, it’s been a while since I was involved with this). I know there are some conditions linked to adverse drug reactions, so I would suggest if anyone knows this happens in their family to be very wary about starting montelukast.

I was on it for a few months, it was great for my asthma but caused some weird psychological symptoms which went away when I came off it.

Just thought I would also say for contrast that my elderly DF has also started on this and it has really improved his respiratory symptoms. It ran out recently and whilst waiting for the GP/pharmacist to re-prescribe his breathing definitely worsened whilst not on it.

Dd has been on it now for 2mths. Def no sign of any of the symptoms mentioned / thank god

My son was prescribed this as a 3 yr old (15/16 years ago), the first winter on it he was fine and it was a game changer for his asthma. He didn’t need asthma meds during the summer but in the September he had to go back on it. Within a few weeks I noticed big changes in him, lashing out, crying a lot, being terribly sad and hurting himself. Montessori school were also have issues with his behaviour. I googled the medication and read on the CDC website about all the issues with it, children in the USA had taken their own lives while on it. On December 8th I took him off it after telling our GP, he looked it up himself then and apologised as he didn’t know it could have that adverse reaction. Within a few days I had my son back to normal, his school commented on how happy, content and well behaved he’d suddenly become again. It is a fantastic drug but with awful side effects parents/patients need to know about. My dd with asthma was prescribed it as an adult but declined to use it.

My DD almost 13 has been on it since she was 2 so definitely not short term for us.