Worry about long term side effects of Ventolin.

[kathrynblah]

I am 43 and was diagnosed aged 18. Until very recently I have been using Qvar and Ventolin to treat my Asthma. Lately my doctor has said my asthma has become more chronic because I am older and that long term use of Ventolin may have caused my airways to tighten permanently. This has really concerned me as I was never made aware that this medicine (that I have relied on for so many years) could have caused me permanent damage. I'm wondering how long have the NHS been aware of this?

[EmmaF91 Community Ambassador]

Hi Kathryn

Sorry to hear about your concerns 😔

That’s very confusing as it depends on what he means when using the word ‘chronic’. Traditionally it means that it’s a long term condition, needing daily medication/symptoms (ie chronic low back pain, chronic HBP etc), the opposite is acute, needing emergency care or extra medication in the short term (ie acute asthma attack, acute hypoglycaemia).

However with asthma chronic can also be interchanged with severe/brittle/difficult asthma which is completely different. Here you have daily symptoms needing ventolin despite multiple maintenance medications, however not always bad enough to need the hospital etc.

The view today is that ventolin should not be used in a maintenance program, just as a reliever (unless very severe/brittle). Currently you are deemed to have poor control if you use your ventolin more than 3 times in a week.

To put it in perspective, I’m severe and I’m currently on; relvar, spiriva, avamys, prednisolone (10mg), fexofenadine, ranitidine, alendronic acid, mepolizumab injections, (just stopped theophylline) and still need my ventolin inhaler more than 3 times a week and can easily end up in hospital if I catch a cold 🙄😅!

In reality there aren’t too many long term effects for ventolin (as it’s only in your system short term), however if you use it multiple times every day, you may get tremors, anxiety and tachycardia (which should calm as you reduce useage). If you are needing it that often to mask symptoms, then you’re more likely to get issues from the actual asthma, not the ventolin (ie barrel chest, repeated infections, lung scarring and airway remodelling). Some of these long term side effects can be reversed, others cannot, but they are evidence of poorly controlled asthma, not side effects from the ventolin in and of itself!

If you’re just on qvar and ventolin atm, it may be worth investigating additional meds which will help control your asthma, and stop you needing the ventolin. If in doubt or if you’re still worried, try calling asthma UK and talking to one of their asthma nurses. They are very nice, very helpful and very knowledgeable!

I hope this helps you a little bit x

[Wheezycat in reply to EmmaF91]

Hm , our daughter when young was classed as mild or moderate chronic as opposed to episodic, that is her asthma did not disappear between colds but could be controlled with the right medication. But she would have acute exarcerbations. It is a long while ago and maybe the terminology has changed. I would consider myself chronic as I have to take medication all the time or things get worse, but I am not severe. My friend is episodic, that is takes no medication at all except if she gets a chest infection.

[kathrynblah in reply to EmmaF91]

Thank you for taking the time to reply. I have had cold symptoms for about 2 months now and my asthma has been harder to control during this time. Last week my doctor told me I had developed acute bronchitis. A few weeks ago a different doctor had changed me from Qvar and Ventolin to Frostair and Ventolin but my asthma was still not under control so the doctor I saw last week put me on Spiromax only as I was having tremors and had a high heart rate from the high dose of Ventolin I had been taking.

[Hidden in reply to EmmaF91]

My condition would be described as chronic as in needing medication on a daily basis to keep it under control; that has been the case for just under fifty years. I would describe myself as a well controlled moderate asthmatic (‘moderate’ going by the strength of the medication required and by the information sheet that comes with it). That said, the fact that any sustained aerobic exercise will trigger an asthmatic response regardless of what I take - or when it is taken - has led one asthma nurse to wonder whether I’m severe. Personally I don’t think so, though to be fair I don’t know whether it’s possible to be very well controlled and severe.

[HungryHufflepuff]

Opinion seems to have changed toward Ventolin. I’m 42 and had asthma all my life, and had Ventolin for as long as I can remember. Until about 3 years ago I had been using the Ventolin daily as recommended by my doctor. Now doctors say if you use your Ventolin inhaler more than 3 times a week your asthma isn’t controlled and it’s too much use. So now I have 2 preventer inhalers that I use daily and I only use Ventolin as and when needed. At some point the thinking about Ventolin changed, I don’t know when, and I haven’t been told what if any effects it’s had on me. All I know is I feel like I struggle to breathe every day and I keep getting different inhalers as nothing seems to help. Well, I had serevent for several years which was really good and my breathing was fine when I was on it. But it was taken away about 3 years ago and since then I’ve had ever changing inhalers. Which doesn’t answer your question. 🙄 But yes it seems medical opinion about Ventolin has changed quite drastically at some point in recent years.

[Hidden in reply to HungryHufflepuff]

No, it was more than three years ago. Serevent was available as a longer acting reliever ten years plus ago, and the advice then was that if you needed to take ventolin regularly during the week to go on a longer acting reliever as well to reduce the amount of ventolin. I used to have a Serevent (salmeterol) inhaler though I have to admit I never really got on with it.

[Hidden in reply to HungryHufflepuff]

I was told in the late 90s to not rely on Ventolin and use my preventer Beconase more and Ventolin only occasionally, so I think the knowledge has been around for a couple of decades.

[Gazza01 in reply to HungryHufflepuff]

I think the whole issue over how many times you can take ventolin in a week must be down to money. I recently read a report that showed no difference in people using ventolin 4 times a day everyday or people on other meds. It also said there was no difference in a preventer plus ventolin 4 times a day compared to the long acting inhalers, it mentioned salmeterol specifically . This was a 1 year study with a couple of hundred people involved. And there was no deterioration in asthma from daily use of ventolin either. Who knows the truth?

[PMRPete]

From 10 years ago:-

healthunlocked.com/asthmauk...

This is about the time when asthma deaths were attributed to medications in the USA.

[Hidden in reply to PMRPete]

I certainly knew that if you needed to take ventolin on a regular basis you had to talk to your GP about then. At that time Serevent (salmeterol) inhalers were available as longer acting relievers if you needed to take ventolin more than three times a week (though you could still take ventolin as well). I have a feeling, though I may be wrong here, that Serevent inhalers came under scrutiny in the USA because of asthma deaths. I also have a feeling that was because some patients confused the two and used the Serevent when they needed to use ventolin, but again I could be wrong.

[Js706]

Apparently using a lot of salbutamol type medications can basically cause your body to become tolerant to it. And apparently it can make airways more “twitchy” too - particularly when you suddenly stop using it.

My consultant was telling me yesterday as he said it’s one of the reasons he isn’t keen on home nebs.

But I would imagine over time your response would also go back to normal and it wouldn’t be a permanent thing when the salbutamol use is reduced

[Lysistrata Administrator Community Ambassador]

I wondered if the doctor actually meant that relying too much on Ventolin rather than preventer medication has perhaps had a bad effect on your airways? Emma has pretty much explained it very well but my first thought was the doctor meant to say you shouldn't have been left to rely on Ventolin and maybe should have had more preventer medication, rather than Ventolin itself being bad.

I heard that the black box warning on long-acting relievers was due partly to their ability to cause 'paradoxical bronchospasm' in some people ie make airways narrower when they should be having the opposite effect. As with short-acting relievers, taking them alone or without sufficient preventative medication is a problem because they are not addressing the reason your airways become narrower.

I have been told by a specialist nurse to try regular, 4-hrly puffs of Ventolin when struggling but not at hospital level (can be more than 2 puffs if bad), as she thinks it is better that than waiting longer and needing more - but my asthma is known to be poorly controlled and a bit rubbish and I am already on a load of different preventers. I don't think there is a concern that the Ventolin itself will make things worse for me, though in an ideal world I wouldn't find that my body is hoovering it up and demanding more every few hours!

[Hidden in reply to Lysistrata]

4 hourly puffs of ventolin is what I always understood could be used if I was having problems. Though it has to be said that that when I have got to that point in the past I have usually ended up seeking medical advice.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

At that point I have usually or am about to contact the asthma nurse specialist. Though my lungs really seem to enjoy taunting me by living in limbo for ages - annoying but carefully balanced in that place where nothing can be done. Sometimes it feels like they could be used as alarm clocks (wake in the night? It's about 3.30am!)

[Hidden in reply to Lysistrata]

The worst thing is when you get to that point during the night. It’s only happened to me on three occasions (two were asthma flares resulting from very nasty infections). I usually use an accuhaler for ventolin, but if things get really bad I do have the evohaler version and a spacer device which is easier to use. I’ve also been told that I can use more than two puffs in situations like that and have done so.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

Spacer is definitely easier to use - I always use evohaler with a small volume spacer when out and a big one at home. I can't use the accuhaler as can't seem to generate enough force when needed. Spacer allows tidal breathing which is definitely easier. And yep have to use more if lungs are having a party.

I would not recommend what I do to anyone else, just in case anyone reads this and thinks it's ok! I can't do much about my daily symptom level but do act if it gets worse.

[Hidden in reply to Lysistrata]

My major issue with the evohalers is the lack of a counting device. Not too bad for me as I don’t have to use ventolin often (and even less often with a spacer device). But I used to have evohalers for preventers as well and really didn’t like them. No counting device and I also found that they tended to get less efficient at delivering the dose once you got beyond the halfway point. This was years ago though (around twenty) and things may have improved since then.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

I don't find they get less efficient as you get through (any lack of efficiency is almost certainly down to my lungs and occurs throughout the inhaler's life!) but I also wish you could get them with counters! My preventer inhalers are now a Nexthaler and a Respimat device and both have counters. I've been caught out a couple of times with the relievers running out but have back-ups ready for this reason. Would be a lot easier if I knew though - I have noticed they start to sputter near the end, but that's not enough time with my usage to get a prescription request filled.

[HungryHufflepuff in reply to Hidden]

I have Seretide which has a counter and before that I had Fostair which I’m pretty sure had a counter too. The Seretide seems to stop working well at less than 20. The Respimat also has a counter. For me what would be useful would be for the Ventolin to have a counter, I use it infrequently and irregularly so I can’t remember how much is left. I use the aero chamber with all of them. 😕

[Hidden in reply to HungryHufflepuff]

I have accuhalers for both preventer and reliever inhalers now. The medication is in dry powder form, but as the first medication I was put on as a child (IntalCo) was also in dry powder form I have no issues with that (if anything, I prefer it). The accuhalers have counting devices. For me this works well, but I don’t have problems with using them. Personally I think (and have thought it for years) that it is shameful that that an inhaler without a counting device is still allowed for a medication that is so critical to the well-being of asthmatics.

[HungryHufflepuff in reply to Hidden]

Amen to that. It would be great for Ventolin inhalers to have a counter and I don't know why they don't, when other evohalers do.

Going back to the advice and opinions changing toward the daily regular use of Ventolin, I moved to the UK 6 years ago. Before that I had never had a peak flow test (as someone else from outside UK was saying a while ago in another post) and I was told by my doctor to use the Ventolin daily. The approach and attitude toward asthma in the UK is quite different. For starters it's taken much more seriously, it's not "only asthma" that's all in the mind, something that's for little girls, and to be embarrassed about. So to me, the advice and opinion about Ventolin did change in recent years. I thought it was general that it was so recent, but perhaps it only changed for me when my doctor here realised I was using the Ventolin daily.

I've never used a powder inhaler but I don't have much "puff" so maybe that's why. 🤔

[Lysistrata Administrator Community Ambassador in reply to HungryHufflepuff]

Interesting perspective seeing it from the view of someone who hasn't grown up here! Can I ask where you moved from? I always thought we weren't great with taking asthma seriously here - at least the general perception is that it's not really serious, and asthmatics are often shown in media etc as just anxious, neurotic and nerdy and fixed by 2 puffs of inhaler and/or a paper bag! I think some doctors etc do take it seriously but it is very variable- I hsve been in A and E where it has been treated very seriously and other times when I feel they just think asthma can't be that bad (or perhaps more that it can only be bad within a specific narrow set of circumstances and if you don't meet those criteria you are fine eg wheeze, low sats etc.)

Our record on asthma deaths in the UK has got worse - we are now 6th worst in Europe. A report was published in 2014 with recommendations on how to improve things but it seems to have been ignored a lot as the stats for preventable deaths have got worse.

[HungryHufflepuff in reply to Lysistrata]

Yes, I moved from France. Everywhere asthma is not taken as seriously as it should be, I don’t know why this is so when so many people do die from it. Attitude and approach can be very variable here, like about the wheeze (you’re not wheezing so it can’t be bad) or it’s all caused by stress and anxiety. For some reason lung disease has a lot of stigma attached, so it’s not understood or talked about as much as it should be and too many health workers think you either brought it on yourself or are attention seeking (!!!?)

[Lysistrata Administrator Community Ambassador in reply to HungryHufflepuff]

France's rates have got worse too according to Asthma UK's research (released May 2018 for World Asthma Day) - currently 1.35 per 100,000 population. UK is 1.98 oer 100,000. The UK's rate is almost 50% worse than the average in the EU (1.32). Data are all on the Asthma UK site. Asthma UK suggests that the rates in the UK might be due partly to it not being taken seriously (1 in 6 people don't know it can be fatal) and lack of basic care.

[HungryHufflepuff in reply to Lysistrata]

That’s really shocking. I don’t know why people don’t know asthma can be fatal. People seem much more aware of conditions like heart disease than about respiratory problems and lung disease. I don’t understand how some people can think being unable to breathe isn’t serious 😕 It’s sad and worrying that the statistics concerning preventable deaths are worsening. You’d think that understanding is improving and progressing but it seems to be the opposite 😞 I will try to find the info you spoke of at the Asthma U.K. website, it will be interesting (which is not the right word) reading.

[Hidden in reply to Lysistrata]

Actually I was wrong about there only being three occasions when I’ve been bad at night. I should have added “as an adult”. As a young child (between the ages of three and eight) it used to happen rather more often. But I was undiagnosed at the time and ventolin didn’t exist; nor had evohalers and spacer devices been invented:-).

[Lysistrata Administrator Community Ambassador in reply to Hidden]

am glad I have not had to deal with that, though I did have to deal with not getting any due to drs. Still, they exist now and I'd be a lot worse off without them even if they aren't perfect.

[Hidden]

Boy I’d like the answer to that one also!

[Chip_y2kuk]

I would question your doctor....

So asthma is an inflammatory condition and airways become inflamed, narrow and fill with mucus

Qvar is a steroid.. beclomethasone that reverses the inflammation

Ventolin is a bronchodilator that causes the airways to relax (making them wider) .. I fail to see how ventolin can cause that sort of damage (it is known high dose over long periods of time can cause issues with your heart in certain people)

Unless he's on about COPD and he's saying the ventolin has covered up the fixed obstruction

[ju-ju-]

Gosh thats worrying.... I have been on ventolin and similar all my life and i had no idea of this. Could you ask them for the research on this?