I have heard once again that Ventolin used over a length of time is extremely dangerous to the lungs and Doctors are being advised by Specialist to stop prescribing Ventolin. I questioned by wonderful Asthma nurse who has become like a sister to me and always ready to help with my severe lung problems, and she told me that our own specialist has been carrying out tests etc and found that this problem does exist.
It may be worth while go ask our own GPs etc. what they know about this situation, and I look forward to any comments that anyone has with this post
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Wheesy
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Where did you see that wheesy ? That would be concerning , I must admit my asthma isn't that well controlled for the past couple of months. I'm using the ventolin , (or salbutamol I presently have) After seeing a nice asthma nurse I note that my new script ( on my app) will be "Ventolin " I'm ok with that.
She's asked me to report in a month if I continue to need my reliever but yes , that is concerning about stopping Ventolin for asthma sufferers.
My reliever has meant I can actually sleep over these cold months !
I've not heard anything about this and while I am not in healthcare, my work currently involves talking to various respiratory specialists who have not mentioned anything about salbutamol (the generic name for Ventolin) being dangerous in itself.
What *is* true is that it isn't safe to rely on a reliever like Ventolin, without also taking preventer medication to address the underlying inflammation. This also applies to the longer-acting relievers that are in combination inhalers like Fostair, Symbicort and Seretide. Long-acting relievers shouldn't be prescribed without inhaled steroids for asthma (COPD is different), and guidelines for asthma are starting to say that even mild asthmatics should have a preventer of some kind, not just Ventolin or another reliever.
If someone finds themselves needing to take a lot of Ventolin, that's generally a sign that their asthma isn't well-controlled, and they may be at risk of an attack, or having an attack. So there is a link between people taking/needing a lot of Ventolin and having serious attacks or sadly in some cases even dying. However, this isn't because Ventolin is a dangerous drug, but because the underlying problems in the airways aren't being treated and the Ventolin just isn't enough - it"s like trying to put out a massive fire with a toy bucket.
Ventolin can also stop helping in severe attacks, or wear off quickly and not help as much - that's a sign that you need to be getting medical attention. Again, that's because the Ventolin alone isn't enough in that situation to open up the airways, and you need other treatments.
I would add that relievers like Ventolin are still needed as a treatment. The goal of asthma treatment is to minimise how much people *need* their Ventolin, but that isn't the same as saying you shouldn't take it if you need it. People with asthma just need to keep an eye on how often they need it and get in touch with their GP/asthma nurse if they need it more. Ideally, they'll have a personalised asthma action plan laying this out.
I hope that I have not upset anyone with this subject, the subject was told to me by my asthma nurse, as my consultant avoids Ventolin and tries all he can to stop people using it And he will only let people who are terminally ill to have a nebulizer or oxygen. He says he has documentation etc. with regards this topic. Has any other asthma nurse heard about it or is it just my his one of my 3 consultants
I'm not upset, but I find your consultant's stance a bit odd. I would like to see what research he is basing this on, as I have never heard it before - not that I'm an expert but I do have to read a lot of scientific papers in this area for work, so I would be interested to know what research this is based on. My understanding is that steroids longer term are more dangerous than Ventolin - but are still used, because they're needed.
You cannot just not give a bronchodilator when it's needed - and especially in an attack, it is needed, though Ventolin may not be enough on its own in that case. So even if he thinks Ventolin is dangerous as a drug, it's unrealistic to just say it shouldn't be given. There needs to be a reasonable alternative with similar effects to open the airways, that people can use as they do now.
As for nebulisers, while I'm aware that there is research suggesting a spacer and inhaler is just as good in many situations, that may not be the case for severe attacks. The guidelines still say you need oxygen-driven nebs for more severe attacks, and I and plenty of others do find that they help when inhalers and spacers have stopped. I have also heard this from doctors and from someone doing research on drug delivery.
I'm very far from terminally ill but I do have a nebuliser to use with Ventolin nebules at home, even though my consultant is very alert to the dangers of.some drugs. A lot of consultants in the UK admittedly aren't keen on people having them at home, but that's usually because they're worried about people overusing them, then when they stop working they're at home which can be dangerous, instead of in hospital where other things can be done.
As for oxygen, yes it should be used appropriately but may be needed in hospital at times. Very few asthmatics will need it at home though.
I know some consultants do get a bit fixated on things (mine really hates oral steroids, though acknowledges they are often still needed). However, I'm puzzled about what your consultant means since I've never seen anything in the literature about Ventolin being dangerous, except as I said in my first post about needing it being a sign of poor control and it not addressing inflammation.
I know I've read elsewhere about the long term affects of Ventolin but I've also read similar items on the long term affects of long acting bronchodilators and inhaled steroids. Inhaling stuff isn't good apparently, who knew?!
I did come across a NZ consultant on one of my biannual trips to the respiratory clinic, who was adamant that Ventolin was no longer prescribed globally. After a lively debate I got to keep my Ventolin prescription. To say she was frustrated with me is an understatement. But 6 months later I'm sat in front of Prof P, head of the clinic, who explains that I don't respond well to steroids and to use my Ventolin when required.
My respiratory clinic also undertakes research and patients are able to volunteer and learn about advances in asthma treatment. They continue to endorse Ventolin as a reliever.
Most appreciated for your knowledge and investigations. I think that these consultants get things into their heads and adamant that they are correct and it is us patients who have to suffer not them. You van make statistics do what you want them to do, it is how they are interpreted.All that I want is to get away into the country side and get on with my life after more than a year shielding.
Are you able to have a chat with one of the nurses who work along side your consultant? They may have the time to send you links to the research on which your consultant is basing his decisions. There's no reason why they shouldn't explain the science behind the claims that long term use of Ventolin is dangerous, especially as NICE has not considered the research sufficient to alter their prescribing advice.
Thanks for the link, Poobah. Might have a look on Pubmed today.
I will add that in my work we have often been reminded that how cells in a dish behave, or how animal cells behave, doesn't necessarily translate to the same effect in humans. Killing cancer cells in a dish, for example, is very far from having an effective treatment for cancer in humans or even lab animals.
You are still only a bairn as ye say in Yorkshire. What I always do and think is look for someone who is worse off than me and I feel tons better. Lets hope that we will now be able to see our friends and family.
Hi Poobah this article is 12 yrs old so why are we only now hearing of the problem with Ventolin as this is also the problem i mentioned earlier for my Nebuliser if GKS has stopped making it how can you still get it as a inhaler? and not Nebuliser vial .as i only picked my meds up yesterday and i had my Ventolin inhaler as prescribed.
I think that it NICE and the NHS move at quite a slow pace when it comes to reacting to research and will be looking at variables in how they can continue to treat patients safely and effectively.
Since this thread started I've had an asthma review with my asthma nurse who stated she wanted me on MART with Fostair 100/6 while also taking Fostair 200/6 as a preventer, thereby withdrawing Ventolin (she brought up the issues with Ventolin) and I said I was happy to give it a go. However, my GP scotched that and I remain on Fostair 200/6 with Ventolin as a rescue.
I've tried MART while on Symbicort, but ended up on the maximum dose every day and really struggling. My Prof consultant was not happy that I had been placed on MART and went back to lower amounts of Symbicort plus Ventolin.
Decades ago I took part in some research that wanted to see if taking Ventolin before taking a preventer inhaler would improve the efficacy of the preventer. My results were quite good and so the consultant who ran the research got the asthmatics who, like me, enjoyed better health from taking Ventolin as part of the daily med regime to continue and that was reflected in the instruction label on every box of Ventolin. That continued for years and wasn't picked up until about 7 years ago and there was a bit of consternation that I had been taking Ventolin daily. Too late now.
As for having nebulisers at home, I know that it will depend on the respiratory consultant as to whether or not Ventolin nebs can be prescribed and will be considered on a case by case basis.
The main theme around Ventolin appears to suggest that asthmatics rely on Ventolin too much rather than adjusting their preventer meds or taking preventer meds regularly, and that is considered unsafe due to the nature of asthma, which can deteriorate very quickly and lead to fatal outcomes. I always feel afronted by this suggestion, but there must be enough evidence that there are enough patients who aren't following a regular prevention regime.
I have a good relationship with my 4 hospital based Asthma Nurses who incidentally will call me to see how I am getting on with my 4 lung problems, and are fantastic and very helpful. I will contact them tomorrow with this question, and hope that they will be able to get this consultant to confirm his conviction. I have more than one consultant and he is the only one as far as I know that has these views. Thanks again.
Something odd here. I believe individual consultants can't just change the rules based on their own opinions & based on their own research. They have to publish and be approved by GMC or NHS in the UK at least . I'd contact BLF (British Lung Foundation) they would know. P
Addendum: your writing 'ventolin used over time is extremely dangerous to the lungs' is very alarming and scary for ventolin users.
I saw your similar post of 3 months ago, readers can see the previous post & 45 replies in Related Posts' to the right (or scroll down on a phone).
Sounds a bit weird. People who use ventolin on a regular basis have less controlled asthma - often because they are not diligent in taking their preventatives and exercising their lungs to improve capacity. I am on 4 drugs to prevent and work out with a tough cardio programme. Have had asthma for 60 years and took ventolin tablets and medicine as a child - before inhalers were available! In my 40’s I was very ill and it took a good talking to by a consultant befor3 I would acknowledge the need to take my preventative meds EVERY day! I was in denial
Just got off the phone with my GP surgery and they have said GKS no longer make it i am now asking can i use 2 Salbutamol vials instead of 1 as i get no relief from Salbutamol
I've been told that the blue inhaler was damaging my lungs too by my asthma nurse but kind of dismissed this since she didn't prescribe any alternative medication to replace it. They're obviously being told to say it though. is it just to encourage regular preventer useage?
My asthma nurse told me this too but I can't find any information to support this. The other reason I've been given is greenhouse gases, and was given Salamol which just doesn't work. It's awful. There must be safe alternatives to Ventolin
I think it's being really poorly communicated in some cases. I would guess what they actually mean is that not getting on top of inflammation with preventer medication, so that you don't need the Ventolin much, is what's damaging.
They're talking as if Ventolin and similar inhalers themselves damage the lungs. As far as I know there isn't evidence for this, but there is evidence that poorly controlled asthma, which is associated with more NEED for Ventolin and so generally more use of it, is associated with lung damage. Statements like 'Ventolin is damaging' without context and proper explanation are not helpful to anyone and could scare people into not taking it when they need it.
I wish they would communicate this better and in some cases stop to think. Correlation is not causation!
I'm also really fed up with the environmental guilt tripping some healthcare professionals seem to be doing. Not all I know by any means, but it seems to be happening some of the time with healthcare professionals misunderstanding the guidance and putting eco friendliness over what works best for the individual patient. They should not be making people feel like they're doing a bad thing by taking their reliever inhaler. If the reliever is being used too much, the answer is to work with the patient to achieve better asthma control so less reliever use, which is good for the patient AND the planet.
I've now found an article in Science Daily re the Leicester University research. Note the research was funded by Asthma UK. Link: sciencedaily.com/releases/2...
Thanks for sharing Poobah! Interesting, though I note the research is focused on allergic asthma (what else is new, seems like it always is, grumble...). I'd be interested to know if there's research on whether this happens with other types of asthma too.
Either way, I think the answer at GP level needs to go beyond 'salbutamol is bad for you, so don't take it' when that's not massively helpful. I would also like to see more education on different types of asthma (biologically and in terms of presentation) for GPs (actually all medical professionals but GPs presumably see the bulk of patients with asthma). There still seem to be a lot of one size fits all assumptions and narrow ideas about what is/isn't asthma.
I couldn't agree more Lysistrata. I did take part in some research several years ago through my respiratory hospital team and they found out I had a sub phenotype, but the only suggestion from Pharma was treatment with chemotherapy (not licenced). Suddenly, Prednisolone didn't seem so bad, but fortunately I fitted the Azithromycin profile. Ideally genetic research could help but there's no funding for this research.
We have so far to go. I was invited to take part in more research, this time into the affect of Azithromycin on mast cells, which was being run along side a novel idea if developing a VitB inhaler - the hope being that inhaled VitB would have the same affect on mast cells.
All these tantalising insights are great but I doubt treatment will change significantly in my lifetime. In the meantime, I've worked hard to reduce my reliance on Ventolin significantly and I count myself lucky that I've been able to do that. But as you say, education of our healthcare professionals is not as it could be and it appears to depend on their interest in certain conditions and it's a lottery to have a GP or asthma nurse in one's practice who has that level of interest.
Education of specialists could do with some work too! I go to a tertiary clinic and they're not interested unless you're allergic/eosinophilic. They won't even acknowledge it's an asthma issue unless you have raised FENO/eosinophils, and my consultant has said he doesn't think any other type is actually asthma - not what the medical literature says. So I've found there's not much point telling them when I'm struggling as they'll just tell me everything is fine and I'm probably doing something wrong.
I've seen another member on here who's been seeing a specialist with such a similar attitude to non-eosinophilic asthma I thought we must have the same consultant - but we don't, she doesn't even live near me. So there's a few out there, depressingly!
Definitely depressing. I have found the research nurses attached to my respiratory team very helpful at times and my asthma nurse is good too, but she does have asthma. The experience of helping with research was a revelation, in that suddenly I was an important commodity and treated accordingly. I don't rate the head of department though, not a good listener (not that I got to say much), he made a blunder by prescribing an inhaler containing a med that had already given me hypertension - literally after my explaining that it gave me hypertension. But I checked the contents of the inhaler against information online, otherwise I would have been none the wiser. Fortunately, my asthma nurse resolved the matter and prescribed something more suitable.
I did have a heated debate with a lady consultant about Ventolin and her belief no one needed it and globally it was being withdrawn. She wasn't best pleased with the resistance she met and relented when I said I would try MART for 6 months, only to be told by another consultant at my next appointment that I wasn't a suitable candidate for MART and to take Ventolin as I needed it. Relief, but how could a consultant say such inaccurate things to a patient in respect of the withdrawal of Ventolin?
I'm categorised as non-eosinophilic but now I know there's more to it than that but research has a long way to go to treat the root cause. Every consultant appears to have their own specific interest and it's pot luck who you see and the advice meeted out. The "fighting for breath" motto of Asthma UK should have an appendage, "fighting for relevant treatment".
Yes, non-eosinophilic seems to be quite a few different things which doesn't help matters! But it would be a start to even have the broad category acknowledged.
I remember you mentioning that consultant about the 'Ventolin is being withdrawn' and 'nobody needs it'. Sounds like she belongs to the same school of fantasy medicine as my consultant ie confusing what they would like to be the case with reality. Have also had a consultant who told me all asthma can be controlled...????? Am genuinely not sure what they think people with asthma should do without a reliever as this never seems to be addressed.
I've heard that with research - and have felt more valued in the small bits I've done. But I'm rarely eligible for trials and at this point feel a bit too burned out to attempt it.
I'm a little wary of seeing drs/nurses with asthma. I had a consultant who did (Dr All Asthma Is Controllable) and she never shut up about hers. And a counsellor I saw years ago who also wanted to talk about her asthma-like issues a lot and equate them with mine. I'm sure not all healthcare professionals with asthma are like them, but this consultant refused to believe anyone else's experience of asthma was valid if it was different from hers, and used it as a short cut to avoid actually listening or understanding the latest developments in asthma. The counsellor apparently turned out not to have asthma at all, so she then tried to tell me I didn't either.
Oops sorry, I'm very bitter today it seems! Lungs acting up more than usual recently, and it's depressing to be reminded of how things are.
You've certainly had a bad run of poor professionals. My asthma nurse has only mentioned her asthma once, in that I had said that trying the same remedy repeatedly when it doesn't work was frustrating and she agreed and quickly explained she found out the hard way but it had taught her a valuable lesson and then back to me and my asthma. Internally, I said "Blimey!" At the end of my review I told her she was the first healthcare professional to listen to me in quite a while and I thanked her- she was taken aback.
But I have wanted to bang my head on the consultant's desk before, just to demonstrate my presence and frustration. I was gobsmacked one evening, while watching BBC1 to see the head of respiratory on a TV programme about difficult to diagnose patients (all manner of symptoms and diseases). He was saying how he went into respiratory as he had asthma and wanted to get the help for his patients that he hadn't enjoyed. Really? Blah, blah, blah. In the weeks that followed, he demonstrated his ability to not listen to patients on TV. I realised it wasn't me. He is very interested in research projects though and published articles - eosinophilic asthma. Fortunately another chap on his team is keen on the unicorns.
I had an ENT surgeon shout after me as I left outpatients as I had chosen not to have surgery and chose non-evasive treatment instead. "You'll be back, begging me to operate". That woke up everyone in the waiting area and I realised that certain characteristics aren't the sole preserve of respiratory medicine.
At least we have this forum - such a valuable resource and a safe place to share.
That nurse's handling of mentioning her asthma sounds great, that's how you do it! I had a nurse in hospital once who had asthma and I found it helpful the way she mentioned it (in the context of another awful Dr. Do I have a sign on my head or something??)
I'll be avoiding that programme like the plague. It isn't us but they can make us feel that it is. And yes the type definitely isn't limited to respiratory!
From work I've also noticed that there are other conditions where there's a 'classic' marker but you can have the disease without that. It is never fun to be in the group without and I used to challenge colleagues at times who would say 'oh it isn't as bad though'. I'd point out there wasn't actually enough evidence to say that, that there were far more treatments for the classic kind and that the 'negative marker' groups were more likely to be misdiagnosed, misunderstood, or ignored.
I'm no expert, but it seems crazy to be trying to stop people using Ventolin because it damages lungs if they're not going to be providing an alternative.
Because however damaging Ventolin might be, it's not half as damaging as not being able to breathe at all!
I've heard this too but when I've asked other sources I've been told different things. I think if used repeatedly and the inhaler, ventolin is ineffective then it's dangerous to your health because you are potentially at risk from a serious asthma attack. However this drug should not be damaging to lungs per se, otherwise it would be withdrawn surely. I have had my ventolin replaced with Salamol that with the claim that it's exactly the same drug so I fail to see how this can be the case. I don't know why nurses are saying this but I felt it was to bully me into using the preventative steroid inhaler, which I refuse to do. My asthma nurse also told me I couldn't even have a reliever blue inhaler unless I was taking steroids too... so I have a steroid inhaler I will not use just to get this life saving medication. I have such infrequent asthma attacks that I really don't feel i need to be taking a steroid daily. This whole way of treating and bamboozling customers is so wrong and confusing to me
If this is true, why do they tell us that Salamol is completely safe to use? When it is, in their words 'the same as ventolin'. Salamol just doesn't work for me I've had to go back on Ventolin. I can't believe this is true,
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