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Singulair montelukast dangerous

WHOA profile image
WHOA
26 Replies

I have been taking this dangerous tablet for 17 years. I stopped last 10 days when I read the side effects. It should be banned. I had nightmares huccinations and blackouts. Sleep was a nightmare and agressiion was always. Now I am free of this drug I can sleep and reason. I am back to my own happy self. Stop this drug now.

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WHOA
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26 Replies
lakelover profile image
lakelover

If you have been on this drug for 17 years & been having bad side-effects all that time you should have been to your doctor. You should have read the information leaflet when you were first given the tablet. If you've only just started with the side effects it could be something else so still see your doctor. Not everyone gets all the side effects & if we get scared at what we're told we'd never take anything & probably die sooner. Montelukast has definitely helped me although I admit when I tried it the first time it made no difference that I noticed.

M-D-F profile image
M-D-F in reply to lakelover

I have been on Montelukast, for at least three years and have had none of the side effects that you have mentioned, nor has anyone else that I have spoken to. I feel that you are scaring other people into not taking this drug. Finally the FDA report states "showed that the drugs are associated with a possible increase". If it alleviate my underlying breathing problems if will continue to take them.

EmmaF91 profile image
EmmaF91Community Ambassador in reply to lakelover

I've been on montelukast for just over a year, the only side effect I get are lucid dreams, and the frequency of these has lessened over time.

Please don't scare people away from particular drugs just because you've had a bad experience. We all respond differently to each drug, some getting really bad effects others getting none. It is our choice and responsibility to decide whether or not our side effects outweigh the benefits and to speak to a professional if we are worried.

For me the side effects are minimal and the results great, but if this were to change I would speak to my GP not just keep taking it (especially for that long!)

It's is ours and our medical teams to work out what works for each of us, not for someone else to scare us away from a drug that can be the thing that helps us regain control of our asthma and our lives!

jabber profile image
jabber

I've been on Montelukast for over 10 years now and haven't had any side effects from it that I'm aware of. I probably read the leaflet when it was first prescribed, but those lists of possibilities are so all-embracing these days that I usually decide to wait and see. For me, the montelukast's only effect was to improve my breathing, which was amazing at the time.

We are all so different and just as our symptoms differ, then our reactions to medicines also differ.

Montelukast was obviously not the right drug for you, as stopping it has reduced your unpleasant reactions. I do hope you find one of the other asthma meds will be more suitable.

Hi why is it u have only just stopped montelukast if it has been that bad why didn't u get the right medication 17 years ago it works great for me mad dreams now and then but it's better with than without for me hope u get the right medication soon

WHOA profile image
WHOA

All I only checked the label when I was getting worse dreams and mood swings. I was taking it is 2000 and the drug company kept it quiet until 2008 only when FDA investigated. I am going to take legal action to see original clinical tests. For 17 years I had no sleep and was permanently tired. No I am free of this dangerous drug.

M-D-F profile image
M-D-F

None of us doubt your 17yrs of problems, but has it occurred to you that this drug has contributed in keeping you alive. All that time without sleep abit of an exaggeration perhaps!

WHOA profile image
WHOA

Sorry but since I have stopped i am thinking straight and my asthma is not worsened after 10 days at all. I am sleeping from 10pm and getting a full nights sleep. I drink far less and my outlook is positive and I don't get moody or aggressive with anyone now. Those strange dreams and wired feelings are gone.

Like I said this drug was prescribed to me in 2000 and I did not not was told the side effects hence why I am taking legal action to have it investigated and banned.

I think a lot of people are under estimating the mood swings sleep disorders and agression in both children and adults from this medicine. There are plans to use it for dementia patients because of the mind bending qualities.

I also don't think it should be prescribed if you drink alcohol.

I have read that it also doesn't do aanything real for asthma treatment then a placebo. Hence why i eant to see the original clinical trials.

Spiritednurse profile image
Spiritednurse in reply to WHOA

A lot of drugs if not all has the possibility of showing new side effects after clinical trials, this is due to everyone's biological makeup being different and therefore responds differently to drugs compared to someone else. Also someone can react to a drug differently years after they first started talking the drug. The BNF also known as the British national formulary is the drugs dictionary used in all medical establishments and pharmacies across the UK, this book lists all possible side affects and uses and is the same as the information on the sheet you get with all drugs. The book also has a section in the back for pharmacist and medical professionals to inform them of new possible side effects that was not previously recognised, so that future copies are updated and for the information to be recorded on the information sheet with the drugs. The book is updated every 6 months, in March and September. The possible reason many of the possible side effects were delayed in being printed and made available is because they were not known before hand, also the volunteers who participated in the trials never showed the side effects which is why it was never mentioned before.

EmmaF91 profile image
EmmaF91Community Ambassador

I know that montelukast (plus many other drugs/drug combinations) can cause some awful and terrifying side effects in some people, and from the sounds of it you are unlucky to be in that number, so regardless of the situation I'm glad that you are feeling better having come off of the tablets, and I hope you remain so.

From the sounds of it you we put on the drug when it was relatively new to the market which may have compounded the issues regarding side effects of the drug. Like many in situations where there are limited options, most asthmatics are willing to try any new solution, even without knowing long term side effects, in the hopes of getting on with life. It seems to me that it's now only really prescribed in either severe/difficult to control asthma where the options are running out, or those who have had severe allergic attacks (where it seems to work at its best).

I do know that these side effects can show up more in children, and where I work there are a couple of kids who only take it on the short term after attacks, which seems to work well for them and their families.

Alcohol wise, I don't drink as it's one of my triggers (when I am well I can have one cider before needing to reach for my vent) so I have no experience with how it would effect my side effects, although to me it's logical that it would have an effect if only because the alcohol is compromising a brain that is already having issues, however that is only guess work not experience!

I don't think anyone on here is doubting your experiences, we are just a group of people reaching out to others like us, who we can commiserate and celebrate with, in situations non-asthmatics struggle to understand. Here is a place of learning and support, not to get at one person or another for their own views, opinions or experiences. Personally for me I have had good results from montelukast, so I wouldn't discourage someone from trying it, however everyone is different and has different reactions to drugs, so if they were to get any side effect that seemed to out weigh the benefits of taking the drug, I would definitely suggest they seek advice from their doctor.

I am glad that you're feeling better for being off them, and hopefully you don't end up having any other issues from your meds. Also don't forget that asthma can flare up and down over a life time, it could be that you're going through a 'good' patch and don't need the montelukast anyway! Often GPs are good at stepping us up during bad periods, however they can forget to step up back down again when we are controlled for over 6 months (I don't know if this is your experience, or if you are currently controlled or not - just my opinion - no judgement!) 🤔🤓😅

shirl13 profile image
shirl13

I too take montelukast and have done for many years. I have also taken oral steroids constantly since 1991(prior to that I was on/off them since 1967 when I was first diagnosed and they were being hailed as best thing since sliced bread) - side effects weight gain, muscle wastage, osteoporosis, diabetes, reflux to name a few but yes I am still alive. Many people tell me to sue, but who would I sue, initial doctor who first prescribed them (think he may be long dead), manufacturer, all the doctors I've seen since 1967 - don't think so as without them I would be 6ft under. Hospital doctors regularly try me on new treatments and I always embrace them but if I have side effects that I can't live with I let them know, I would not have waited 17 years. Hope your asthma remains stable, good luck.

I am surprised there was no info pack in each packet you were given. Every med I have ever been prescribed has one in every time.

WHOA profile image
WHOA in reply to

There was no real side effects in 2000. In fact Merck was forced to come clean on 2008 by the FDA and as a result put it on the packet. I never thought about reading as I was alreadysubscribed

StaceyJ profile image
StaceyJ

By your post I'm surprised that one of your side effects of aggression has lessened -I've been taking it for over a year now and it works great for me. I wouldn't tell anyone to stop taking a prescribed medication without first speaking to their doctor and certainly wouldn't want to post that these drugs are dangerous and worry people who take them.

WHOA profile image
WHOA in reply to StaceyJ

I spoke with my doctor and he told me to stop. In fact he was not surprised. As my asthma has not worsened In the short period I don't need a replacement.

DotPro profile image
DotPro

I know many people sail through smoothly but WHOA, you are not alone.

I had very terrible Montelukast side effects.

I would get tingling in arms and legs, neuropathy of sorts. I even got sciatica.

Then I got terribly weak. I was using asthma inhaler more.

Eventually, I decided to dead stop the drug and told my doctor. At first he did not believe me. He probably thought they were panick attacks.

One time I got numbness in the arms alone- almost like carpel tunnel, while driving. That is when I knew it was serious.

Well, after 4weeks of the Montelukast which I had taken for 2months, I felt stronger. All the tingling went away. Weakness went away and I reduced on using my Ventolin inhaler but I kept on Pulmicort.

I think I read somewhere that when on Pulmicort, Montelukast offers no extra benefit.

Sometimes we over use medications or are over prescribed by doctors in an effort not to miss a thing.

My doctor allowed me to dead stop Montelukast and Laratidine. It was a good call.

If you notice side effects, do not feel shy. Even if you are 1 in 10,000 be firm and tell your doctor. Some will say NO it cannot happen but all our bodies are different.

I also get Severe Hiccup on Dexamethasone.

I read articles online, a few people have the same.

Eventually even a first dose of Dexamethasone will make me hiccup for 24hours. Yet at first I could do 3days with no hiccup. My doctor stopped that also.

The body seems to remember drugs and develop a reaction to them too.

Listen to your body and tell your doctor.

mrsgailowens profile image
mrsgailowens

Singular for me has been a God send stopped my coughing at night. Stopped my night time itching.

WHOA profile image
WHOA in reply to mrsgailowens

It has been the devil in disguise for me

mrsgailowens profile image
mrsgailowens

Sad to hear that. I have been very fortunate, it has been a God send, for me

Fedupinventnor profile image
Fedupinventnor

I have been on daily dose of prednisolone for around 6-7 years and having got down to a maintainance dose of 5mg a day I was finally losing my moon face - had actual cheekbones again- and the belly fat ,which was the main hatred of mine, was going down from a six month pregnancy to almost flat !! But breathlessness and tiredness was still a problem....a dilemma I feel most pred-bunnies can relate to . I didn't want to go up again to 7-10mg so tried montelucast.At first I was chuffed but after a couple of months or so I noticed my belly fat was back and way worse - despite eating less and drinking lots of water. I now looked nine months pregnant & felt very physically uncomfortable . I've decided to come off it.......so disappointed. Anyone else had this happen ?

SJS46 profile image
SJS46

WHOA, I found your post very interesting as I too suffer with high anxiety. When I first started taking this medication it hugely agitated my mood, effected myself control and deeply affected my sleep and left me feeling very lethargic. After quite a period of time this did settle down somewhat but if I accidentally missed a dose I have noticed these affects again.

I came across this post because I have stopped taking this medication three days ago due to the fact it seems ineffective recently and am experiencing difficulties with my ability to cope with stress and my general mood with my anxiety through the roof for no obvious reason. I was searching to see if any other patients had experienced similar feelings of withdrawal from this medication and looking through quite a few posts I found a common denominator in this area regards people with long-term anxiety difficulties. The way I am feeling today is really not me and is a bit scary so I can relate to your feelings regards this medication.

Mahina profile image
Mahina

After taking this drug for three weeks I started using my former heavy steroids less. For the last four nights I have also had horrendous vivid nightmares. I just checked the info packet again and see that “vivid dreams” are listed as a possible side effect.

That’s one way of putting it.

I would prefer not to sleep than to put myself through that again. I don’t know how long it takes for the nightmares to stop after ending use but certainly hope it’s not long.

Best luck with your recovery.

As I now see this a UK forum, a word of encouragement to keep the light of democracy burning while we in the US are in a dark patch for a bit. Onward.

andydandy profile image
andydandy in reply to Mahina

I too am in the US and have doubts that we'll remain the country we once were.

andydandy profile image
andydandy

I started 8 days ago. Nightmares (when I can sleep), bruises, fatigue, slow heart rate, walking in mud feeling, depression and headaches. Called doctor and she said take 'no more'. Slept for 10 hours last night. Not so tired this AM. Still have a niggly headache but Tylenol might help. It's hard to believe there isn't something to open up airways without killing you. I'm going to do an in depth research on natural remedies. I'll just keep using my Ventolin (Albuterol with spacer) every 4 hours. Anyone out there who's done the 'natural' thing?

ssuperheroine profile image
ssuperheroine

I’ve been taking it on and off for years and it made my asthma and allergies disappear completely. I have pet cats and I can pay with them, when before I wouldn’t stop sneezing if I’m in the same room as them. I stopped wheezing when sleeping and I can work out without stopping every 5 minutes to catch my breath. I have PTSD so I don’t know whether my depression, agitation and dissociation are exasperated by this drug or even caused by it, but it’s totally worth taking the risk. It’s a truly life changing drug and I want to thank who ever invented it because it gave me a new lease on life.

mnemonic profile image
mnemonic

Hi,

I know it's an old post but I found it when searching for "singulair weight gain sweet cravings". I wanted to chime in because I have experienced pretty much every negative side effect reported by others here.

I was first prescribed montelukast around 2006. A horrible stomach infection was followed by several bouts of ear infection and a bad case of hives that lasted months. Then these side effects disappeared. However, I stopped taking the medicine a couple of years later.

My asthma got really bad a few years after that and I have started and stopped it a few times over the period 2013 - 2021. Every single time, shortly after starting it, I had hives that lasted months and the worst blocked sinuses I had ever experienced despite the fact that I have been an asthmatic and have had allergies since childhood and have always taken some sort of anti allergy medication.

Again, these side effects settled every time after a couple of months. Asthma improved substantially. Ability to exercise was amazing and I almost never needed my inhaler during a run or a strenuous walk. I did use to take Ventolin before a gym session but felt that it was unnecessary.

Why did I need to stop it every time? I felt it depressed me and made me angry/depressed and prone to dark thoughts. Moreover, I often got vivid unsettling dreams due to which I started taking it in the morning instead of in the evening and that may have helped.

Whenever I stopping it I was more clear headed, happier and more relaxed. Also, I seemed to eat less. What is strange is that while I was on montelukast, I got sweet cravings and would eat so much/such large portions that I often found my food and sugar consumption horrifying. I had never been much of a sweets person nor a big eater.

The reason for going back to it every time was simply because it did helped to control my hard-to-treat asthma.

Over the last 2.5 years that I have been taking montelukast, my asthma has been better-controlled that it has ever been (only very occasional symptoms, much milder than ever before). However, I have also gained about 11 kg.

After stopping it about 3 weeks ago, I have lost 3 kg most of which might just be retained water. However, what is true is that I am not constantly looking for food and there are no sugar cravings. The only sugar I have during the day might be sharing half of a stick of KitKat with family member or a toast with jam in the morning and one or two pieces of fruit. According to my estimate I am eating at the bottom end of my recommended daily allowance (through no effort on my part) as per the NHS BMI calculator which means I am going to (hopefully) continue losing weight.

Surprisingly this time, my asthma has been more or less stable. It is very slightly worse and I got a lot of mucus in the nose/lungs (though I haven't had a blocked nose) sneezes and watery eyes, but doubling the dose of my antihistamine (Fexofenadine) has almost fixed these symptoms. My asthma is perhaps ever so slightly worse but and I have throat irritation (perhaps due to post-nasal drip) but nothing that distresses me.

The reason why I have been able to quit montelukast this time without an asthma exacerbation is probably because over the last couple of years my doctors tuned my regimen until it was nearly perfect. So withdrawing montelukast from the mix means the other elements are still doing a good job. For anyone who is interested these are my remaining medications:

1. Relvar Ellipta: this was arrived at after many other steroid + bronchodilator inhalers didn't work despite high or very high dosage

2. Spiriva Respimat: I started using this a few ago after it was licensed for asthma (previously it was a COPD-only medication).

3. Fexofenadine: This has worked wonders. Previously I was on loratidine (wasn't strong enough) or cetirizine (very effective but made me drowsy)

4. Lansoprazole: for acid reflux. This has worked wonders. I also avoid eating less than four/five hours before going to bed.

Also, one other thing that may have helped a lot is that I now avoid eating/drinking much of anything with citric acid as I have learnt that whenever I have oranges a few days in a row or Coke or other citric-acid-containing soft drinks a couple of days in a row, I get an asthma exacerbation that lasts for days.

So to anyone who gets moodswings/melancholy moods/aggression/overeating/weight gain/body aches symptoms from montelukast like I did, I'd say make sure you have fine tuned your asthma medication regime perhaps with modern medications replacing those that you might have been taking for years/decades. Then speak to your doctor about coming off it.

When I was first prescribed montelukast about 15 years ago, I was told that it was so safe that they gave it to babies. Now it seems there are reports and even label warnings of side effects/adverse events of almost every type that I have experienced except weight gain/overeating/sugar cravings and even those get mentioned in blog posts here and there. However, I am lucky to have come off it, for once without triggering an asthma flareup.

Regards

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