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Tried every preventer possible

SarahR1 profile image
30 Replies

Hi everyone. I have tried every preventer possible such as seretide, flixotide, symbicort, Alvesco etc and two days ago i was given flutiform. All of them cause me EXTREME voice hoarseness, chest pain, shortness of breathe, headaches, mood swings, sleep issues. However, after taking flutiform I get extreme heart palpitations and can’t even sit still because my heart is beating so hard. Is this normal? I’ve never experienced heart palpitations with a preventer, only ventalin. Also, has anyone tried singular or motelukast? My dr keeps offering that but I’m too worried about it. I’m so frustrated as nothing works and I feel like giving up!

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SarahR1
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30 Replies
Jobie1 profile image
Jobie1

I got moved from seretide to a new inhaler Trinbow. I am on monteluklast (which is singulair)and Prednisolone . Also antihistamines fexofenadine and piriton . I also had a course of anti biotic ciprofloxacin.My asthma flared out of control on 30/3 and I’ve been on 8 steroid prednisone and all the other meds plus now nasal drop Flixonase since. I still have to take my blue inhaler upto 40 times a day. My asthma was previously under control with no usage of my blue ventolin. I feel your frustration I too have had enough and wonder how much longer this can go on 😔🤷🏻‍♀️

SarahR1 profile image
SarahR1 in reply to Jobie1

Hope you feel better soon! I was the same. Didn't have a flare up for ages yet now it's a daily struggle.

annette2008 profile image
annette2008 in reply to Jobie1

Hi. I have been on Montelukast for 12 years. It was life changing . My asthma is now well controlled. Good luck.

Singinglouder profile image
Singinglouder

I’ve had the same trouble with preventers - bad side effects, and they didn’t even work! Waiting to see consultant at the moment, tho of course it may be a very long wait. Montelukast is the one thing that does work for me - and no side effects at all. Could be worth trying.

SarahR1 profile image
SarahR1 in reply to Singinglouder

It's great to hear that many people take montelukast and don't experience side effects!! Makes me feel more willing to give it a go. I've ran out of options and that seems like my only hope right now. I am worried though since even a small dose of inhaled preventers such as alvesco give me terrible depressive episodes and hormonal changes so I am worried I may be prone to worse side effects.

Hamscoul profile image
Hamscoul in reply to SarahR1

It's very frustrating and frightening when you feel like nothing is helping. Getting side effects on top of the asthma symptoms is tough. I have been there. There is hope. Ask to be referred to a specialist Asthma clinic. They will help you figure it out. It's not hopeless and it won't always be like this.

twinkly29 profile image
twinkly29

Sounds like the montelukast would be worth a go - yes SOME people don't get on with it but many people do, with no side effects whatsoever. Like with any medication I suppose, yes there are a huge list of possible effects but not everyone gets those.

I know some people find certain types of inhalers troublesome, eg can't do MDI but can do dry powder, but if you've tried them all types then that's presumably not the issue.

Really rubbish situation to be in though, especially at the moment.

SarahR1 profile image
SarahR1

Thanks for the reply! My doctor keeps pushing me to go on it since it makes sense as one of my number one symptoms is a hoarse voice and the montelukast doesn't cause any of that. Just so scary to read all of the terrible stories about it yet so many people take it with no symptoms at all. Maybe it's a risk I might just have to take!!

twinkly29 profile image
twinkly29 in reply to SarahR1

Also antihistamine - are you on any? Might be worth a try as this tree pollen season has caused issues for so many people, including lots who previously didn't suffer with it.

SarahR1 profile image
SarahR1 in reply to twinkly29

I'm actually from Australia so we are heading into winter soon!! I do however take antihistamines in allergy season to keep my asthma at bay. I spoke to my dr on the phone after I posted this and she suggested I take a break from my preventer tonight and try going back on alvesco tomorrow morning which was my pervious preventer before flutiform. It's a never ending cycle!!!

twinkly29 profile image
twinkly29 in reply to SarahR1

It is...the joys! Hope this is the thing that works for you!

Chickennuget profile image
Chickennuget in reply to SarahR1

I take montelukast as well. I rarely use an inhaler. Had a few side effects at the beginning, now I rarely have some slight panick attacks but I recognise them and keep them under control. U should try changing your diet as well. Try to eliminate gluten and dairy from your diet and see how it goes. Good luck!

Poobah profile image
Poobah

Preventer inhalers are steroids and so it appears that you are sensitive to them. It's a recognised as steroid hypersensitivity. If you Google that it will explain it etc.

As steroids are a major plank in treating asthma it means your doctors will have to be more imaginative about your treatment.

I take Montelukast and apart from vivid dreams it works well. I'm allergic to cats, dogs etc but since taking Montelukast I can tolerate our family cats much better.

Back to your winter treatment. Ask your doctor if he'd consider Azithromycin seeing as you can't tolerate steroids. Azithromycin is an antibiotic and can be used long term, say every winter for up to 6 months at a time. My consultant explained that the treatment was developed in Japan for patients who couldn't control their asthma over the winter. I tried it a couple of years ago and it was marvellous.

Hopefully, if you see a respiratory specialist they will explain your steroid hypersensitivity and what sub type of asthma you have. Knowing that will definitely help them treat your asthma better.

B_Asthma profile image
B_Asthma

Hi,

I take Singular and it is the only thing that keeps me sane. It helps to prevent wheezing and shortness of breath in asthma. It is not an inhaler but taken as a tablet. When I take Singular, I find it has a mild anti-hitamine effect, which means I rely less on my steroid nasal inhaler and a little less on my Ventolin.

Abc64 profile image
Abc64

I take montelukast. I think, since adding fostair 200/6 and braltus, I am finding that my asthma is more controlled.

samkatzkeenan profile image
samkatzkeenan

Have you tried relvar? It’s the best I’ve ever used. Sam

Karen2020 profile image
Karen2020

Was on motalukast for a Yr or so helped to start with but stopped helping after that so was put back on Uniphyllin it's a very old drug (tablet) but it really helps me. I'm also on Relvar inhaler that's really good. Don't give up keep trying till you find what helps you.

Wintersbite profile image
Wintersbite

Hi my doctor after years of trying to get my proventer sorted just put on my notes that I'm allergic to all of them I'm I'm to just manage with my ventolin maybe my doctor gave up to soon or maybe after 5 different ones that landed me on a nebuliser he done the right call as I have not heard of half of these. So if you end up finding one that works good for you if not sounds like you doctor might be putting the same thing on your notes as they did on mine which makes it much more interesting when it comes to medical treatment like out of hours as the first thing asked is proventer and deliver followed by what do you mean you don't have a proventer only a reliver.

Maxza profile image
Maxza

Don’t give up. I think asthma is so unique that you have to find the right treatment for you. Just reading the thread and inhalers that have worked for others, specifically Relvar, which also works well for my sister. Awful for me, the throat problems I had were ridiculous. Montelukast for me, no side effects but also no help either. So I think, although it’s frustrating, it’s persevere, there will be something out there that helps, maybe your medical support team just need to think outside the box a bit. Good luck and I hope you feel better soon x

PattyT22 profile image
PattyT22

I would definitely give montelukast a go. I am sensitive to most medications but don’t have a problem with montelukast. I get terrible headaches with a lot of puffers and palpitations. I started the montelukast to help with the mucous production from allergies and it is very effective. Good luck!

Allblacks123 profile image
Allblacks123

Hello, hope you are staying at home, I've been taking fostair, monteklast and wnntolin for years with no severe side effects as advised by my doctor and nurse. Please phone your doctor ao asthma nurse, you might need a different strength are you also using a aero chamber to take your inhaler??

I rarely take my blue puffer, only when needed.

Kindest regards

Smoggy1990Boggy profile image
Smoggy1990Boggy

Do you drink plenty of fluids during the day? And after taking the preventer have water then spit it out to try and prevent oral thrush? I have been on that medication for years and think it is brilliant. Some people have really bad adverse side effects with it but it is definitely worth trying. Has the GP surgery used an incheck device to see what preventer suits the way you breathe in the best?

Elspe profile image
Elspe

They tried me on so many preventers. I was told that I was allergic - no surprise as I have MANY allergies, specially to medicines - but they didn't say I was allergic to the STEROID but to the propellant, ie, the chemical the thing is dissolved IN. Turned out when we researched it that many preventer puffers use the same basic oils as propellant. So I am on montelukast, and ventolin when I need it. This regime works, most of the time. Hay fever is a nightmare though.

I use high dose Relvar. I’ve been on many others but this is by far the most effective. It’s only taken once a day as well so that’s good.

Yellow75 profile image
Yellow75

I am on Montelukast, had lucid dreams for a couple of weeks but calmed down. Found only thing that has ever raised peak flow. Don't find preventers work well for me. I've been on symbicort now on flutiform. Haven't had palpations with it though. Could try montelukast. Other thing is to gargle/ swill mouth out after steriod inhaler dose and double check technique right. I do wonder if preventer doesn't work well because can't get to smaller airways, which I think is where problem with asthma inflammation for me tends to start. Preventers aren't quite good at getting into these. See how you, think asthma meds are a bit of trial and error.

Readingwheezer profile image
Readingwheezer

I'm on flutiform which I like (preferred my last inhaler but raised risk of pneumonia which didn't work for me). I tried montelukast and it didn't help me. Side effects were very mild (a rash) and I've heard very positive things about it so worth a try

Tazzy2 profile image
Tazzy2

Montelukast works for me without any side affects

Carriejen profile image
Carriejen

I cant offer inhaler advice, I am on fostair though and its been a dream for me.

With regards to montelukast, I feel like it helps me a lot and the only side affect I get with it is wildly vivid dreams. Hope you get something that helps you

Kevinking profile image
Kevinking

I'm really sorry for the suffering you're going through. Can I suggest an alternative route, which sounds really weird , but may be worth a try.

Acid reflux!! Or to be more precise , LPR aka silent reflux. Lpr can trigger alot of breathing issues and asthma issues, where the inhalers don't do much to help. Low stomach acid levels is a major contributor to this along with sibo. Look up the symptoms of lpr ( bloating, gas, postnasal drip breathing issues etc) . There are tests that can be done, home tests to check acid levels ( bicarbonate of soda acid test ) , also heidelberg capsule test . Also check for sibo with a hydrogen methane breath test.

God Willling you'll heal soon my friend.

God Bless you always

Kevinking profile image
Kevinking in reply to Kevinking

healthline.com/health/gerd/...

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