Since ditching singulair i have loads and loads of energy and im also feeling really upbeat. Not only have I whipped my asthma into line but ive also been researching loads on meds and methods to keep my asthma at bay, I however came accross this in wikipedia, please scroll down to the montelukast part.
shouldnt these things be mentioned by Gp's when actually issuing the medication? Is there a connection to using montelukast and Churg-Strauss actually developing? I know that its listed as a side effect. I only wish i researched this medicine to this scale before i had it.
I'm not sure how true the link between Montelukast and Churg-Strauss syndrome (CSS) is.
CSS often presents with asthma like symptoms - so there is a high possiblity of having it and being prescribed montelukast to control 'asthma' and then finding out later that you don't actually have asthma but CSS.
People are often diagnosed with asthma as it is the most likely diagnosis, only when it becomes less well controlled/severe do further investigations take place. I guess GPs don't mention it to patients because it's very rare and they don't want you to worry about it?
see what my issue with this medication is that my hysersensitivity to medications and the side effects here - i dont think i should ever have been given singulair. Espicially when linked to this syndrome.
omg
I am really not sure what to make of this???
I was re-diagnosed with asthma last september after a 20 year gap and was given singulair and other meds amongst a mixed feelin that i had pneumonia - that was cleared- since then i have had severe allergic asthmatic reactions and have been diagnosed with severe atopic/allergy asthma and singulair was one of my first asthma meds prescribed>
Should i be concerned? im even being screened for ige/allergy treatment this week? I live on steriods and singulair as my most regular meds so ewe and crying out loud!Could this partially be because of singulair - im allergic to other meds- ie anti biotocs? or have i simply misinterpreted or misread? please advise ?????
I have looked into Churg-Strauss a bit - I have been tested to see whether I have it (I don't but apparently I could still develop it- joy!).
My understanding is that developing Churg-Strauss isn't really a side effect I think it is more that if you have it, Montelukast could make it worse. Bear in mind that Churg-Strauss is really really rare and it is more than just asthma and allergies! Confused, if you are worried best thing is to have a chat with your GP and see if you need to be tested.
GPs can't mention all the side effect of every medicine! It is listed in the product information leaflet in my montelukast packet (just checked).
Hope my ramble helped a bit>
Bryony
Hi i will do i'm due to go in for a check up soon. i've had to stop singulair and told to on my last check up i guess i'm more allergic to medicine than i thought before. thanks your ramblings do help. out of curiosity how do they test for it?
CSS is one of those conditions that is so easy to miss or even be diagnosed with when you don't have it. There is no actual test as such for it and relies upon the judgement of consultants. I knew the link when I requested Montelukast, was it an issue, not in the slightest for the simple reason that it's not a common link and CSS as a condition in the general population is extremely rare. If you start wonder what if, then how about the normal ICS we all use, linked to brittle bones on old age. Have a life now and cross the bridge with whatever turns up in the future when and if you get to cross paths.
hi woody,
i admire you for being able to follow that motto - i would hate to be in a situation when let say 40 years down the road i ended up with something nasty and the doctors would say oh its that meds you had started all those years ago...I did that with my asthma when it was mild (back in my late teens) thinking im a tough girl and not realizing its mild asthma (well i knew it was but never followed this up with my doctors) and now im busy puffing on inhalers all day!
plus i had the swine flu jab and that just kicked my asthma into chronic stage!
hi, the link wouldnt work for me so not sure what this is about. i was on monti but it didnt make any difference so was stopped, consultant said it doesnt work for many people. ive been trying the breathing exercises but although i can slow my breath down when im not having an attack doesnt work when i am...what have you been doing that has woprked so well?
Confused thanks for bringing this information to our attention . But to suddenly stop taking medication goes against medical advice due to risks involved and changes in control of asthma. At present you have done this successfully. But my concern is for others who may copy your actions but may not be as lucky with their asthma control. I therefore strongly urge all who are concerned about their treatment discuss it with there gp , nurse or respiratory team
I agree strongly with woody I would rather have control over my asthma than to die young with an attack and deal with side effects when and as they occur. Sorry if my wording appears strong but this is due to concerns for others who may suddenly stop taking their medication.
just for the record
I did the switch at the same time that i had been given a course of antibiotics and told to increase my flixotide to step it up and down as much as needed to prevent a massive attack. Also the timing was important i had a month of nothing not a chesty sneeze and the out of the blue had a bad rhinitis attack so clearly it was time to leave the singulair.
Jay, its actual stepping up and stepping the inhalers down that does the most benefit to controlling asthma - yes, montelukast did wonders for my sinusits but i started to develop symptoms which mimic'd diabetes and i was slowly and gradually noticing these things over a period of time and not for a moment thinking a little pill could have such a massive impact on my body.
gussypoo i discussed this with my gp as my excessive thirst was more annoying than a inhaler puffing routine. I was given a choice to stay on it or drop it and have slightly less controlled asthma but then in the same breath he said or drop it and increase a puff of the sterioid element (flixotide) and drop it down when you feel fine.
I can now deal with my fussy tempramental lungs - but i think i'll give my kidneys and bladder a rest think they've had a hell of a work out on singulair. Also i listed the side effects of all my meds and did that pro and cons thing - my opinon, asthmatics are better off on ventolin and inhalers (inc. nebulisers) and than most of the tablets that doctors/GP's dish out easily. I'd say a short course of preds (7 days) is much better than a year of singulair. Espicially when its difficult to determine if a person has CSS in the first place.
I hate to say this but ALL asthma meds can have potentially serious side effects, but generally not as serious as uncontrolled asthma. It is about weighing up the pro's and con's of each medication and the limitations asthma puts on you.
It is dangerous to use too much Ventolin without using a steroid inhaler as regular use of ventolin can mask inflammation and mucus build up and can lead to a severe attack.
All bronchodilators either short acting or long acting (Salbutamol, Oxis, Serevent etc) can lead to tachyphylaxis (a decrease in responsiveness to a drug) if overly used. Meaning the more it is used on a day to day basis the more you will need to get an attack under control. Some people require large amounts of BD and I am not suggesting they should reduce this!
Inhaled steroids in high doses can cause adrenal suppression.
Prednisolone if taken regularly even in short courses can cause side effects.
Steroid sparing agents such as Methotexate have a whole host of unpleasant side effects.
Theophylline type drugs have a fine line between a theraputic dose and toxicity, and many people have side effects such as nausea or headaches when starting/increasing this drug.
Xolair is a very new drug and no one really knows what the long term implications are for taking it but it has been very effective for some people giving them a new lease of life.
Asthma is a serious disease with approx 1500 deaths a year - even though there are POTENTIAL side effects these medications are life savers and should be treated as such.
I am not trying to scaremonger, just pointing out that all medictions may have some side effects, but these are generally worth tolerating for good asthma control and quality of life. Not all medications are right for everyone, some are tolerated better than others and some work more effectively than others, it is a case of finding that right mix.
I write this as a parent who has to make very difficult decisions about my childs medication regime and constantly worry about what the future holds, am I building up problems for him later in life, is it fair his appearance has changed due to steroid use and he is being bullied at school, should I continue with this drug even though it is making him vomit, do I choose the fortnightly injections or go with the drug that could cause liver damage? No decisions are easy and I come on this forum for support and advice when making these decisions.
I agree with Woody - live life to the full and cross any bridges IF they need crossing!
hi koolkat,
I understand that they are all not great but i made a choice based on my tolerance level - i do get side effects from the seretide 500 and i over look them as i know that this medicine works for me. Those have actually dissapeared now.
I also have a lot genetic illness which my family have - i know i will probably get those too (got most of the other stuff!). Thats a natural element which im prepared for - personally i dont want to add more by keeping a medication which are potentially likely to damage something else or trigger something else going on im my body.
Koolkat thanks for ur words of wisdom. I am so grateful
My mum is so similar to you. She had to make hard and difficult decisions on my asthma til I was old enuff to make these decisions for myself. Evento this day she will continue uo have a say and opinion on my asthma. Which I'm grateful for .
koolkat, I like the list and yes thats just the tip of the iceberg, and I don't envy you or any parent having to make those decisions.
If it's any consolation, when I was at one one asthma and copd consultation events last year, I met many with asthma far worse than myself and many with copd. They were all saying that to live a life now inspite of a few side effects and potential long term problems was something they were inclined to do. Like one lady said, would you want to live 50 years with poorly controlled asthma and able to do nothing in the knowledge that one attack may kill you, or live a life now and spend the last 10 or even 20 years of your life with something as a side effect from being able to live when younger and enjoy yourself.
If we go back to the OP and take CSS, if caught early you can halt it's progress and what about the line ""Montelukast does not appear to directly cause the syndrome"" but if you read this, all those diagnosed with CSS had asthma (medlink.com/medlinkcontent....
As the others said- wise words Koolkat. It must be worse to make decisions on behalf of someone else. As Gussypoo said it is great to have supportive and interested parents even as an adult (mine are both doctors- though it can be a case of too many cooks sometimes).
My feeling is that it is all about risks and benefits. Does the risk of side-effects/complications outweigh the benefits of increased asthma control? It is not just meds that have risks even X-rays/CT scans etc. My hope is that doctors also think about risks and benefits and they will be suggesting treatments/tests because the benefits far outweigh the risks. I don't like the side effects of theophylline but it does improve my asthma control and hopefully reduces the risk of ending up in hospital again!
Bryony
Hi all,
i have CSS. Do I think that taking montelukast was a factor in devloping it? NO. All that the research says is that those diagnosed with CSS are more likely to have been taking montelukast than the general population. Wow! what a revelation! Scientific breakthrough of the year (not!)
Since the first phase of CSS is new onset or worsening asthma, wouldn't it be a surprise if people diagnosed with it *weren't* taking asthma meds? ... In fact, the research also showed an association between developing CSS and taking pred, and no one has proposed that pred is a factor - it remains a core treatment for CSS. In short, there is a big difference between correlation and causation, and noone has come up with any evidence of causation or even any hypothesis for why montelukast might cause CSS - all it is is a correlation between taking asthma meds and developing a condition the first symptom of which is asthma.
that's my take on it anyway. I think it is a poor bit of research (and i do research for a living).
bryony, well said. Thats exactly what made me sway toward ditching singulair. This medication was given to me as apart of cocktail of medcations. I had to get rid of it knowing my antibiotics will cover me short term and that the control of my asthma would reduce. I dont necessary like inhaling a high dose in steriod medication - but i need this years ago. My parents were apprehensive when i was in my teen years about the preventers and would say 'oh be liberal at using that because its a steriod based one' and foolishly i listened. Little did i know years down the road i would be dependent on them anyway! This i am willing to keep as benefits are immense! Singulair i have huge reservations the article never picked out theophyllin or spriva. I havent found masses of side effects on those medications listed by masses of people who have had side effects to SIngulair.
I just sat back and thought this through - listed all my side effects and thought about the severity of all the side effects put together and the fact that my three inhalers also add more.
I just want to clarify my point that I ditched this medication with my GP's permission and that was done after a blood test to rule everything out. Please dont read this do anything when your asthma is not controlled enough to handle a change.
My concern for other asthmatics is that we get bad quickly and often when gp's (like in my case) see several things kicking off and tend to give a cocktail of meds in which one may trigger something bigger off. I was unaware that all the things making me feel worse were due to singulair.
Putting aside quality of research, i dont need an elaborate masterpiece to tell me this is not a long term medication be on. My previous GP put me on them and ive been trying to figure out why im hyperventilating every morning for months on end with my new gp. 6 days without this and not once has that happened! (I am touching wood).
Everything has a side effect (as koolkat stated so well) but often we're not in a position to think of that and need to take medication because we are so sick. Its like bryony said my choice was 100% asthma control versus 70% control no more diabetic-esq side effects and no medications with hepatis and suicidal thoughts listed as side effect (I finally found that leaflet!).
anyone who wants to alter their medications should consult their gp first.
I personally wouldn't freak out about it I have Churg Struass and have never taken Montelukast. Churg Struass is extremely rare, and like others have said any drug prescribed whether it be for Asthma or any other condition has potential side effects, so the benefits have to be weighed up against the disadvantages. For example if i took all the disadvantages of taking Prednisolone and decided that that I wasn't going to risk them, my Asthma would be so bad that I probably end up being either terribly crippled by my Asthma or quite bluntly dead. Churg Struass only effects about 1 in every 200,000 people when I did my research when diagnosed, taking that into account if the Montelukast was beneficial I personally would take the risk, but at the end of the day the only person who can make that decision is you. As for GP making patients more aware of this condition and the potential association with Montelukast in my own experience until I was diagnosed my GP and most of the GPs I have come into contact with in the past 6 months had never heard of it and I had had to educate them. And the specialist who diagnosed me had only ever met one person with it previously, I am his second and to show how long he has been working as a medical professional, he is retiring in a few years!
Hi, at the moment I'm trying to survive having asthma and I'm on lots of different meds including big doses of the nebuliser every 4 hours.After a big blip last Sunday and a spell in hospital, I'm just grateful to still be here. I know I should be concerned about side affects of drugs but without them I wouldn't be here, so it's a no win situation.Just to get my life back would be a huge start. My Husband is on 2 different types of immunosuppressant to keep him alive with masses of awful side affects,we both have regular blood checks. Sometimes you have to look at the bigger picture.
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