Clenil, Why should I take it? - Asthma UK communi...

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Clenil, Why should I take it?

moonerman profile image

Hi all,

Disclaimer, I've just got off the phone about this, so I'm a bit hot headed about it at the moment, I appreciate there are people who are in a much bad way than me so apologies for this post if it frustrates anyone.

I've recently moved and the practise I'm with now does not give out Ventolin on repeat and I've been asked to taken Clenil daily. I haven't suffered an asthma attack in well over 30 years. I take a shot of ventolin when I need to, primarily my triggers are after a bout of sneezing, laughter, during a bad cold, etc. I may be old(ish), but I'm not overweight, healthy and walk daily so I'd say my Asthma is mild and I take Ventolin only when I have symptoms.

I'm not convinced that Clenil will help and it feels now like I have to sacrifice a small animal in order to appease the ventolin gods to get my next one.

Do you take it? Has it helped you or not? Convince me because I really need convincing.

Thanks

30 Replies

I really do not why some of the medical profession are stopping prescribing ventolin and I along with many other asthmatics [I have 4 related lung problems] . It would be good if leading specialist would make valid explanations as to why this long standing medication is being removed, on this web site . I think that they are being given incentives by medicine manufacturers for prescribing their products I have probably just opened a can of worms or stirred an hornets nest.

They will not allow me a nebulizer for use at home.

My specialist when questioned said that with my critical illness that they need to see me, so next time that I am in A&E I will ask to see him in person,{I bet he will have a lame excuse because he is on the golf course].and A&E can continue to complete their useless tick box and send us home knowing that within a week we will be back, just like ARNOLD SHWARTZENAGWER.

I could rant on forever and nothing is going to change.

Keep Well and be safe

moonerman profile image
moonerman in reply to Wheesy

I guess at the moment, I would say I get through 2-3 ventolins a year (I also take one prior to exercise) whereas I would be expected to get through 12 clenils a year. So that's £28.05 for ventolin against £112.20 for the clenils if I pay the £9.35 and not go through any discount scheme, etc

Asthma is incurable, my symptoms are managed and I'm given no rhyme nor reason other than "it's what we recommend" as to why I have now been prescribed Clenil.

twinkly29 profile image
twinkly29 in reply to moonerman

It's not that you can't have ventolin, it's that someone shouldn't be relying on ventolin, for the reasons I've explained below. But with clenil taken properly you shouldn't need the ventolin very often.

MaggieHP profile image
MaggieHP in reply to moonerman

Assuming you mean 2 - 3 ventolin Inhalers a year that is actually not a small amount and implies that your asthma is not as well controlled as you believe. My asthma, considered very well controlled, means that my ventolin inhalers rarely drop below forty actuations left by the time I need to order new ones because the current ones have passed their use by date (in other words I’ve needed to use fewer than twenty actuations in the space of 2/3 years).

moonerman profile image
moonerman in reply to MaggieHP

I exercise regularly and always take a ventolin prior to undertaking the exercise, this was agreed upon with a doctor from many, many years ago. so I've always gone off that.

MaggieHP profile image
MaggieHP in reply to moonerman

I think it’s a case of what recent research has shown and how that alters a change in approach. It’s annoying when it happens, particularly if you are happy with regime you’re on, but you might be better with clenil.

Out of interest, what kind of exercise are we talking about?

MaggieHP profile image
MaggieHP in reply to moonerman

Also, you mention cost and yes, it will increase. But bear in mind that a prepayment certificate will cover all medication you require for the period paid for, not just your asthma meds.

Freddy1973 profile image
Freddy1973 in reply to MaggieHP

I must disagree with you on this one.2 or3 ventolin inhalers a year is nothing. I have been asthmatic from 3years of age ,I am now 71 and have been prescribed many different inhalers over the years.Not everyone can tolerate cortisone inhalers.

MaggieHP profile image
MaggieHP in reply to Freddy1973

If you are not cortisone tolerant then yes, other means have to be found of course, but I don’t get the impression from what has been written above that that is the case here.

Getting through two to three ventolin inhalers a year means between 120 - 180 actuations (with an inhaler that has 60 actuations) per year. As a moderate asthmatic I would be concerned if I needed to take that much ventolin to keep my asthma controlled. Actually it would never get to that stage as I would be seeking advice to see if there was something else I could take to help with it.

Like you I have been asthmatic since aged three (but was undiagnosed until age eight - not my or my family’s fault, the medical profession refused to acknowledge it was asthma despite the fact that I’d had quite severe eczema for much of my first year of life and that there was family history). I’m now fast approaching sixty. In my time I’ve had non steroid inhalers (IntalCo) and a number of different steroid inhalers. Switches to different medications (and subsequent adjustments) have always been made when there is good reason to do so and usually because I’ve flagged up an issue. The one time I flagged up an issue and was ignored (the steroid inhaler I was on was insufficient but the medics refused to listen with the result I ended up relying more and more on ventolin) I ended up in hospital when a viral infection went very quickly to pneumonia and the asthma rapidly went completely out of control. So I also know how quickly things can go wrong. My asthma is currently very well controlled - people who don’t know me well aren’t usually aware that I even have it.

Js706 profile image
Js706 in reply to Wheesy

It’s not general prescription of ventolin that they’re trying to stop, it is only having ventolin prescribed or ventolin being given out repeatedly without a review that they’re trying to stop.

This is because ventolin is only a reliever so will only help short term with symptoms, but does nothing to help with the underlying inflammation or other issue that has led to the symptoms. It’s one of the things that was identified as contributing to deaths in asthmatics.

Also with home nebulisers, your consultant is right. There are very few situations in which a home nebuliser is appropriate for asthma (they may be used more in other conditions) and if an asthmatic is requiring nebs they do generally need to be seen and assessed by a healthcare professional (as again, they don’t do anything to deal with the underlying problem).

This is because guidelines say it's not safe (even though years ago it was deemed to be) to rely only on ventolin. Being a bronchodilator, it opens the airways and gives symptom relief - but it's not actually managing any underlying inflammation. A bit like a plaster covers a wound but doesn't actually fix it. The clenil (presumably a low dose in your case) will treat the underlying inflammation all the time (as it needs to be taken every day even when well) which means you're far less likely to suffer an attack (which could still be fatal in mild asthma) or ever need to use your blue inhaler. Apologies if you know all that!

My "take your clenil" encouragement though is someone I know of who has mild asthma. She rarely bothered with her brown inhaler, just used the blue one if needed. She suffered a huge attack, out of nowhere, and very quickly ended up on a ventilator. If she'd taken the brown one regularly it's highly unlikely she'd have had such a bad attack. But often fatal attacks happen in apparently mild asthma because the asthma is under treated - the asthma may not be super mild, just not symptomatic.

Wheesy profile image
Wheesy in reply to twinkly29

You appear to have a lot of knowledge are you a specialist or are you talking from your own experience

twinkly29 profile image
twinkly29 in reply to Wheesy

I'm not a specialist (other than in my own asthma). I was just saying what the actual reasons are behind people seemingly "having ventolin stopped" - which isn't the case, it's relying on ventolin that's dangerous, or potentially dangerous. And the example given is a real example of someone I know who did rely on ventolin and nearly died.

Wheesy profile image
Wheesy in reply to twinkly29

I did not intent demean your knowledge but as you always have a logical response to peoples questions. Why dont you become an Astma Nurse as the NHS do require people like yourself who will speak as they find and in a language which we all understand. Thanks for your responses..

twinkly29 profile image
twinkly29 in reply to Wheesy

Ha ha thanks for the vote of confidence - think I'd have to become a nurse first though! I know they're busy but some doctors and nurses just don't explain stuff - like Moonerman being told "we just recommend it" - explain why! Or people not being told when and how to use an inhaler or a out monitoring things at home. Basic info would actually save them time and issues in the long run!

Wheesy profile image
Wheesy in reply to twinkly29

I dropped a clanger only the other day after a very rude A&E just said that I could go home and sped off into the distance and did not give me a chance to as about what the blood tests had shown as the previous ones showed a blood clot. I asked the nurse who was looking after me and she said it was not me for discharge but the person in the next bay. I was given fluids and allowed home the next day with follow up from a hospital specialist. I did see one of the Doctors pointing towards me and he obviously been given a severe reprimand from his superior

MaggieHP profile image
MaggieHP in reply to twinkly29

The frustrating, and worrying, thing is that my younger son (now in the US) was not allowed a preventer inhaler when he requested new meds (he did admit he also had got in to the habit of not using it because he never felt he needed to) and was given only a ventolin inhaler: the doctor said there was currently no evidence to suggest he needed a preventer. Now granted, I suspect the number of times he has needed to use his ventolin since then could be counted on one hand (we’re talking two years ago) but it’s still a little worrying. I’m all too well aware (and so is he) that just because he is currently symptomless this doesn’t mean the condition has gone away for good.

twinkly29 profile image
twinkly29 in reply to MaggieHP

I guess there wasn't evidence because he hadn't been using it - but a bit worrying as you say that the doctor didn't actually say hmmm yes please do take this!!

I think it's only relatively recently that many people have discovered that ventolin is "restricted" and that preventers are preferred - so maybe his incident happened before that.... although I suspect there will be some places offering inadequate advice!

MaggieHP profile image
MaggieHP in reply to twinkly29

Or just a different approach in the US. At the moment he’s fine (fingers crossed it stays that way). Asthma does run in the family (I have two nephews and a niece who all have to be careful) but in all cases they have improved markedly as they’ve got older and the condition is now either mild or symptomless. I’m very much the exception, but then the medical profession were in denial about mine for five years when I was a very small child so …🤷🏼‍♀️

twinkly29 profile image
twinkly29 in reply to MaggieHP

Ah sorry I assumed he was in the UK when it happened. Yes I'm sure the US have very different approaches - they seem to give nebulisers out to anyone and everyone which would also fit with the rely on relievers approach!

In my GP surgery they have stopped ventolin on repeat so that people order it when they need it, rather than always having spares. This means they can track your asthma based on how much ventolin you're needing over a period of months. If you're requiring it each month they presume you're uncontrolled, so you need a review.I would imagine it's similar for yours as they want everyone to be as controlled as possible so they don't need ventolin.

OK CHANGE YOUR DOCTOR WHO WILL GIVE YOU VENTOLIN

Clenil is a preventative medicine that treats the asthma, ventolin is just an acute emergency medication.

It’s like regularly using emollient creams on skin prone to eczema to prevent it, verses waiting for a flare up and having to use different/ stronger stuff and have reactive poorly skin.

You’ll find that you’re lots better on clenil generally.

If you have a peak flow monitor and a tracking card to track twice daily, you may / will even see your peak flow (lung capacity) gradually improve over two weeks. Which will improve your overall health as well as reduce the need for ventolin.

Asthma can get worse at any time but especially as we age. Peak flow naturally starts to drop. Clenil would protect against a sudden onset of new asthma attacks.

Yes agree - and if people don't have a peak flow meter and aren't monitoring it regularly, they should be!

Here's a photoshot of the current Stepwise Asthma Management plan the NHS has published (it says Lincolnshire but each Hospital Trust will have the same as it's a national plan). Step 1 clearly shown a SABA such as Ventolin (Salbutamol) plus the GP can "consider" low dose ICS ( inhaled-corticosteroids). A reliever is part of the plan. If you can manage on 3 Ventolin a year that's good (my asthma nurse works on 3 a year for relatively well controlled asthma - in my case that's 180 doses a year as each inhalerhas 60 doses).

If your Ventolin has a higher number of doses, say 200 per inhaler, then that may be the reason why the GP has prescribed a preventer inhaler as the aim is to reduce Ventolin use to 2 or 3 doses a week.

It may be worth making an appointment with the asthma nurse at your GP surgery in order to talk through your experiences and expectations. This will give them an opportunity to explain their take on the Stepwise plan, which includes a reliever inhaler at Step 1.

Stepwise Management Plan

By what you say the GP is just stopping the ventolin by repeat prescription, not stopping it. Personally I try what the GP suggests if it does not help we discuss it and look at other options.

Hi, I have been a Severe Brittle Asthmatic all my life. I would definately take tne Clenil, but this withdrawal of Salbutamol (ventolin) is absolutely ridiculous. If you have mild asthma, then of course, listen to the practice nurse or gp. . but with asthma you cannot and must not put all, your faith in these people. It is sad but true. An asthma management plan is always a good thing to have in place, which can and should be reviewed and can be set up with your gp team. If your asthma is severe, then, thats a whole different thing. You know your own body and chest better than anyone, and certainly better than a practice nurse who, yes has had basic asthma training, as have GPS.. but they sadly do not know very much, nor do they have alot of experience. They are General Practioners, I nearly died at the hands of a gp. Surgeries have their tick box, asthmatics often do not fit in a 6ick box format. I keep my own oxygen SATS and peak flow monitoring, I now have damaged lungs due to that gp..so I do have a nebulizer, and only use if/when flaring. I would say, take control of your own asthma as much as you can. Listen to your own body. Never hesitate to seek help and advice if needed. I still find it shocking that the surgeries play god, and as a rule never listen to individuals knowledge snd experience. I am only an expert with my lungs, becau.se I have had to be, but I'm no one elses. Every asthmatic is different. As a final note, it is true that Clenil will help to keep your bronchi /airways calm, it will help to keep the lung inflamation down, and protect your lungs keeping them healthy and open. so you will not need the blue inhaler. However, and not a contradiction, you should always have a blue inhaler near. just in case. If your asthma is mild, the Clenil should be all you need. If it does not work for you, and different preventer inhalers work better for some than others, it's about finding your right one..then maybe ask your gp about a dual inhaler which you take as a preventer, ie, twice a day, but it has a reliever build in..you would "never" turn to this if your asthma worsens, but these inhalers can be beneficial..again, meaning you wouldn't need your blue. If your asthma does worsen, then, you do need more advice quickly and regular assessments. The most popular dual inhaler seems to be Seretide. I hope this all helps, but if you are not happy with just Clenil, tell them, they are not experts. Stay healthy

Please note, Clenil does NOT work for everyone. It does not work for me, though I understand that's fairly unusual. I've been tested for allergy with Clenil and it DID cause a reaction. They also tested some other preventers. Each one of them caused a reaction (in an observed situation with a nurse standing by. WE ARE NOT ALL THE SAME. I would like to shout this from the rooftops. I'm asking again for allergy testing and suspect somethin in the meds - oleic acid was my thinking, but that can be made from several different things. For some reason, Ventolin does not affect me that way and so Ventolin and Montelukast are all I have for asthma. It's fairly mild but always allergic - and can be very bad. Three Ventolin inhalers a year would be very little for me. Also, my Ventolins don't have counters, so I have no way of knowing how much of each one I use. I don't throw them away until they are very light and presumably empty.

Hi yes I take Clenil Modulite 100, 2 puffs twice a day, I hardly use the Ventolin, I order one when needed , or it's out of date .

No, I don't. After around 30 years of being given Ventolin and Clenil on repeat, I have stopped completely. I discovered the problem I was experiencing was due to the drugs themselves. My breathing and excess muccus led me to start using a ventilator with the prescribed steroid liquid. it was then that i found my mouth, lips, tongue and eyes swelling on use because i am allergic to the damn thing. I now control my excess phlegm with lemon juice in hot water in the morning and Olbas Oil on a tissue next to my pillow at night. It's not completely gone but it's a whole lot better than it would be without and another drink of hot water with lemon juice helps.

That said, I am speaking from my own experiences. I'm not suggesting you take the same route. You might get tested though????? ATB P

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