AIBU to think that Montelukast / Singulair is poisen!

[Hmmmmminteresting]

I posted here around a month ago asking how / why my 1 year old had had a personality transplant in the space of 2 months. I was at my wits end. During the thread I mentioned that he was on asthma medication and straight away a few picked up and asked if it was Montelukast.

What followed was hell. He was admitted to hospital on the back of gp concerns due to his very sudden change in behaviour. He would scream day and night, refused to eat, was losing weight, wouldnt sleep, wouldnt interact at nursery anymore etc.

The pediatricians dealing with him knew instantly this was all down to the awful side effects of this drug, something we had not even considered. He was taken off it immediately and one paediatrician said he hopes it will be banned soon.

The long term side effects can be life changing.

There is a Facebook group all about it (link below) which has taught me so much and I wish I had never exposed my son to this drug.

m.facebook.com/groups/40378158644/?ref=group_header&view=group

Gps surgeries have now started sending out letters to those on it warning them of the side effects since the government recently published the below, but in my opinion none of this is happening fast enough and gps are not even obliged to tell!

www.gov.uk/drug-safety-update/montelukast-singulair-reminder-of-the-risk-of-neuropsychiatric-reactions

I cant believe that these pharmaceutical companies can play with ours and our dcs lives. We were never warned of the side effects!

I'm still so cross but thankfully dc is almost totally back to his old self. It could have been a different story if it wasnt for those on Mumsnet who pointed it out.

I take that & have for years, will read up on it now.

I had heard of these effects but my son and experienced none of them and for him it was a miracle drug! He used to have frequent hospital.admissions for serious breathing difficulties and now barely ever even needs a puff of his reliever inhaler

I’m sorry you’ve had such a bad experience but for balance there are literally thousands of people that it has been life changing for. All medications carry side effects.

I was definitely warned about the potential side effects for my son when montelukast was first prescribed for him and that was 5 years ago now. Admittedly in hospital rather than from GP though.

My DD had an absolutely awful time with it-she was about 12 and it very nearly had dire consequences-
I dread to think what might have happened if id not found a thread warning about the dangers

she was in a horrible place-am still devastated at how she felt and that the consultant that prescribed it did not warn us even though the side effects were known

I had it prescribed for my young dc, they started having bad dreams, so I stopped giving it to them.

I'm sorry you've had a bad time OP but it doesn't take a rocket scientist to work out if you are giving medication to a child you have to keep an eye out for side effects.

I believe if it works it can be a bit of a miracle drug. It was certainly easier than trying to use an inhaler on a toddler.

We used it with dd1 in 2009, we had been warned of the side effects, but tried it hoping it would improve her asthma symptoms without negative effects. The side effects were too great so we stopped it. I have friends who have dcs on it with no side effects.
It is the way it is with drugs.

YABU

The companies are NOT “playing with your lives”. For many people, the drug is life changing. I’m sorry it was a negative experience for you, but that doesn’t preclude it from being a wonder drug for many.

You say you weren’t warned? Didn’t you read the information leaflet? The warning is there to be read.

My little boy took this from 18 months old to almost 3years old and has become gradually a different boy 😢 he used to be my best mate a happy giggly little chatterbox of energy and fun. He’s now manic and moody and a bit violent and a little bit scary to be honest, he struggles not to hit and be rough and he’s so short tempered. He’s been off it for about 5 months but not much change so far, I’m just really hoping his demeanour improves as time passes and he isn’t just a ‘difficult’ personality now 😧 I too found out about the side effects through my own research and immediately took him off it!

Wow. I take it and riots the difference between my asthma being well controlled and having to struggle daily.

My son has been on it years. It has simply transformed his life. No side effects at all.

Every drug has side effects. My Ds has severe asthma and this is one of many medications that keeps him alive.

If I read the side effects of every medication he is on then I wouldn’t give him any. It’s shit when you react (Ds has to some) but that doesn’t mean they shouldn’t be used.

I actually think that people scaremongering so much about a drug that can help so many is probably more dangerous

I taken if for about 4 years under hospital. It been life ch aging for better for me. I had uncontrolled urticaria where I'd literally scratch my skin off. This drug stopped all that and iv never had any side effects you described.

@Sirzy I agree- anyone reading this who takes the drug, if you wish to stop taking it, please see you Dr first. No one should be going cold turkey on drugs without medical advice.

mumsiedarlingrevolta

My DD had an absolutely awful time with it-she was about 12 and it very nearly had dire consequences.

Going through exactly that now, it never even crossed my mind it could be the meds.

Hmmmmminteresting

Thank you for posting this.

My son takes this and has no issues at all

Lightandshadows I'm really sorry to hear that. I hope that things work themselves out.
I knew I'd have people saying I am scaremongering, I think until you're made aware of what this drug actually does to your brain it's easy to say 'I was fine'.

A recent report by the EU said many adults experience side effects affecting mental health many years after use.

One toxicolgist actually submitted a report 10 years ago showing how it pretty much blocks certain receptors and rewires parts of the brain that deal with emotion and behaviour hence so many feeling suicidal and having serious anxiety issues etc. Most of this is irreversible. Her report was ignored back then but now it is being looked into!

I cant believe that they're not putting explicit warnings out with this medication.

If I can help even 1 person realise that this is potentially changing their lives without then I'll be happy.

Frustratingly my ds didnt even have asthma. He was given it as a precaution as he was getting chest issues. We were told to keep him on it till he was 6. Thank God that due to MN we made the link faster

Following with interest as I was put on Montelukast yesterday. I was on it a few years ago and had no adverse effects then. The main side effect I was told about was an upset stomach.

DS was put on montelukast at 4, he didn't get any bad side effects but it also had absolutely zero effect on his asthma so they took him off it after 6 months.

My ds had serious side effects; anxiety, suicidal thoughts, anger, bed wetting, tics. I asked at the GP could it be the Montelukast and was told no.
I stopped it accidently ie forgot to give it to him and his behaviour changed. So I stopped it. I went to the Doctors and was told I shouldn't have stopped it without medical advice. I explained I had tried to raise my concerns and had been told there was no chance his issues were drug related. They also refused to raise a yellow card and insisted he was referred for management to the hospital.
At the hospital we walked in and the consultant said "Have you been experiencing problems with Montelukast?"
I am delighted about all the recent warnings about the drug. It can be a miracle drug, my ds's asthma was controlled amazingly by it but the neurological side effects have been horrendous and I will never know if there long term affects from the drug.

I'm really sorry your DS had such awful side effects. My DS took it for a while when younger after nearly dying several times in a series of terrible asthma attacks. It saved his life, stabilising him while the course of steroids strengthened his lungs. We then reduced and stopped the Monte as the side effects list were alarming to read although he didn't experience anything untoward.

Drugs are only licensed after enough data is gathered to get a good view of the balance of benefits and drawbacks. Yabu to say it's poison. Overall on average across the thousands of patients who take it, it does a lot more good than harm so it is a sensible thing to try, if the risks of not doing so are also awful.

I was not warned about any side effects.

I should of read up about them, I was just told, it would help with the asthma and allergies, no mention of anything adverse at all.

A friend of mine's teenage dd has had terrible side effects. They have had to take her out of school at the moment.

I think it’s unfair to call a drug poison if it helps others on here. There are some drugs I can’t take due to side effects, which are life savers to others, i’m not self obsessed enough to declare them poison.

I'm sorry to hear of your experience OP, that sounds awful. My youngest DS was in a clinical trial as a toddler after being hospitalised with asthma four times in three months. He now has it as a blocker, so if he gets a cold or any signs of asthma/bad chest he takes it for a week. We've not noticed any side effects, but as he's nearing his teens he has fewer issues with his chest.