I've been given a trial of Clenil Modulite 100, 2 puffs twice a day. After the second dose on the first day of taking it, that night my heart was thumping so hard it felt like my chest was about to burst, I got so anxious and hardly slept. Awful! I reduced to one puff once a day and my breathlessness was controlled at first but then started to become more frequent, although the palpitations and insomnia died down.
I then increased to one puff twice a day but the faster heartrate and interrupted sleep at night has come back, although not as bad as with the 2 puffs twice a day. Is it the dosage or the type of inhaler that could be the problem? I explained my side effects to one GP and her reply was just "well that's what inhalers do , because they're steroids" which was basically her way of saying like it or lump it. Any advice?
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Girlygo
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All steroid inhalers are commonly known to have side effects but these usually subside/disappear as the inhaler kicks in and your body gets used to it. It takes approximately 8 weeks for a steroid inhaler to be fully effective although the side effects should be much less more quickly than that. It is possible it's the type of steroid or type of inhaler (ie one you press vs one you suck) BUT switching so soon isn't a good idea as you won't know what the issue is.
It's best to give this several weeks to see what happens with the side effects and of course how it helps your breathing (it will take time for that side of things to improve), though of course speak to your GP again if you're concerned. Also bear in mind that anxiety can cause those exact symptoms so if/when it happens (am assuming it will be after you take a dose initially), try and ignore the effects, distract yourself, relax etc as being anxious could well exacerbate the symptoms and then actually they become because of anxiety rather than their initial onset if that makes sense?
Thanks for your advice twinkly29. I will stick with it a bit longer... to be honest, I haven't been consistent with it due to ,what I can only be ashamed to say, initial denial in accepting that perhaps I do have asthma as I've struggled to come to terms with it. Added to this was the absence of any tests to diagnose it by my GP who just said "try them, if they work, then we know it's asthma, " although I have since been referred to the Chest Medicine Assessment Clinic. I guess I was thinking until properly diagnosed it could be something else.
So I'd say for the first 3 months I was just taking one puff once day and using the rescue inhaler occasionally which was ok. It was really when I got back into exercising and cardio a few weeks ago that things got worse, but I really didn't think that the feeling of pressure building up my head, struggling with stamina, the fatigue and lack of concentration that followed hours late could be down to the asthma?
I was then using the rescue inhaler 4 or 5 times a week so have since been on 1 puff, twice a day for the last 2 weeks. I realise that this is lower than the prescribed dose but you reckon I should just stick with this for another month?
I would go with the prescribed dose as otherwise it's unlikely to have the effect it's supposed to have and/or will take even longer to kick in.
The lack of tests initially was actually quite normal even before covid as impact of a steroid inhaler is one of the diagnostic tools. Tests can be helpful as part of the process and to confirm but, in asthma, the tests can be normal anyway depending how you are at the time. If you're not already doing it, I would also make sure you do your peak flow twice a day (usually would be before using the Clenil) as, over time, this can also show if the inhaler is helping or not and so potentially add to the "is it asthma or not?" thing. Another reason to go for the proper dose as otherwise it may not be a true reflection.
This is my new to asthma post with various other links in about inhalers and peak flow which might be useful:
Thanks, that's really helpful. I'll bump the dose up again then to the prescribed 2 puffs twice a day. I suppose in a way it's better to just take it properly and deal with the side effects hopefully settling down in a few weeks, rather than dragging out half doses and perhaps not feeling the full benefits as quickly.
No, I’ve had chenille for years and I’m ok with it. I vary between 1 and two puffs / once or twice a day depending on the season. I used to stop it when things were good but an asthma nurse said to take at least one puff once a day to ‘prime’ my lungs.
To be honest I’d rather not bother when I’m ok. I’ve never had an asthma attack and I know when my chest feels funny.
I find if I ever use ventolin I feel just as you have described - my heart races and I feel really hyped up - It’s not nice at all. So I stick with the chenille inhaler to make sure I don’t need to use ventolin.
I keep a ventolin inhaler in my bag because I was told I should but because I use the brown one I find I don’t need to.
Hi Fruitandnutcase, that's interesting that you vary your doses. I was the same as you in that I stopped taking my one puff a day after a while at first because I was feeling better and thought my asthma was "cured". The breathlessness came back though within a few weeks.
I'm wondering whether the rescue inhaler may be adding alot to the hyped up feeling and insomnia I'm getting as I've been using it alot in the last 2 weeks. Mine's Ventolin too. Does ventolin stay in your system long?
With it now being Spring and getting a bit warmer maybe that could also be bringing on more symptoms. The exercise is really the catalyst for it at the moment. I guess the scary part is that I never knew asthma symptoms could also include fatigue and heady symptoms too - well mine do at times. So glad I found this site - I've learnt alot already!
Ventolin/salbutamol is supposed to last at least 4 hours (in terms of good effects). I'm not sure exactly how long side effects are supposed to last but it could definitely be helping to cause those feelings as it increases the heart rate.
The idea, as fruitandnutcase has found, is that the brown inhaler controls things so the blue isn't required (or not very often), though of course (as she also mentioned), it's important to still carry the blue one. The reasoning behind not relying on the blue as the main way to control symptoms is that it only treats surface symptoms but not any underlying inflammation and it could be masking things. Hence also why, once things are controlled, needing to use one's ventolin more than normal or more than 3 times a week means a review should be sought.
The difficulty with reducing doses of preventer inhalers (which shouldn't be done without consulting GPs or nurses) is that it takes a long time to kick back in, so if it's not taken as prescribed all the time then it's useless when it's needed as it's not effective. In some cases, people are allowed to take the brown seasonally, eg for autumn/winter, or spring/summer, but it then needs to be restarted a couple of months before it would be needed.
I didn't realise that the reliever inhales took so long to build up. My GP at the time of giving them to me mentioned just 2 weeks.
Unfortunately I was not told about keeping any kind of peak flow diary or given any information other than "try this and come back in 6 weeks." So this shows that there is a real difference in educating people about coping with and monitoring their symptoms. My treatment plan is non existent to say the least.
I've also heard that you shouldn't just suddenly stop using inhalers either. Is this because of withdrawal as well as a return of symptoms?
Sadly you are spot on with the caring education in asthma! It's a huge bugbear of mine. I think Primary Care for asthma in the UK needs a rethink. I'm sure if there was a better approach including consistent monitoring by patients from the start and all GPs and asthma nurses were more aware of asthma as a condition (ie asthma is not just about wheezing) then asthma control of mild and moderate asthmatics would be much better and many wouldn't need escalating up the system. Fair enough those who genuinely do but many people end up on meds they don't need to be on because proper trials of meds aren't carried out/monitored ...or they're told to just use their blue inhalers. Some GPs and nurses are fabulous and should be cloned though - but as a system education is definitely lacking!
Stopping inhalers shouldn't be about withdrawal - yes the preventers have steroids in them but inhaled steroids target the lungs and aren't systemic/throughout the body so they don't have the same effects like that as oral steroids do if taken long-term. If someone is on a really high dose they would (or should) go to a lower dose rather than stopping but that would be about stepping down to a lower be level (due to asthma being controlled) rather than stopping. So am guessing what you heard is to do with taking them all the time so they're working all the time. Also with the idea being that the preventer inhaler gives control and therefore asthma symptoms are not there generally, a lot of people think "oh I'm better now, I don't need this". But of course they're "better" because they're taking the brown inhaler!
It may well be you'll get an asthma plan once you've properly trialled the clenil (and if not it would be worth asking for one) which should tell you what to do and when in terms of seeking help if things flare up. However, they'll need to know your best peak flows and suchlike in order to do that which is another reason it's good to do them regularly. They should be using a patient's best scores, not the archaic averages, because it's so personal and for anyone who isn't average then it can be really unhelpful if they use those. I think there's a link to EmmaF91's peak flow post in my new to asthma post - she explains peak flow much better than I can!
I have noticed something strange with my clenil modulite 100 in the last 12 months. My usual packaging was swapped for one with a yellow lid - I checked online and apparently this was due to supply issues and these were exactly the same as the normal product. When I got the second yellow capped inhaler, I had sudden onset of palpitations, mainly at night, but quite alarming as the episodes can go on for several hours. These were diagnosed as PVCs and most likely benign as test showed nothing wrong with my heart- they went on for months and then suddenly stopped. The only thing that was different was that I had started a new inhaler a few days before. A few months later, when I started my next inhaler, the PVCs started again and have been bothersome since June - during which time I've gone through a few inhalers. Last week, I started a fresh inhaler and the PVCs have stopped again. No idea if this is just a coincidence or not, but the appearance and disappearance always happens when I start a new inhaler.
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