I am seeking advice from you guys and gals so I hope you will take a few minutes to read through this and then give me your thoughts.
Several years ago I used to suffer from a tight chest, mainly in the sternum area but also the ribs occasionally - in fact, I think I have been suffering from it all my life but just accepted it as 'normal'. I also felt as if the left lung/side of my chest was constantly blocked, almost as if (ridiculous I know) I was breathing on one lung - and I was diagnosed with adult asthma by a GP who provided me with a blue bricanyl reliever and a brown pulmicort reliever.
I took the pulmicort, one puff twice a day, and, wow, within 24 hours the constant tightness in my sternum disappeared and I felt wonderful. Fantastic I thought. I took a few more puffs the next day and on the third day I had a huge panic attack, was breathless and ended up, courtesy of my local ambulance team, in hospital. They diagnosed me with a panic attack - something I had never had prior to that and had no idea how dreadful they are.
So I came out, assumed that the pulmicort was the cause and tried not to use it... but the tightness returned and so I began using the pulmicort very sparingly - i.e. I would take it for a day or two and hope to get away with it. As a result I began a serious of panic attacks over several years which basically destroyed my life. I would get panic attacks out walking, driving, all over the place but only when I had recently taken pulmicort. Sometimes I would get a huge panic attack within an hour of taking a puff of pulmicort - terrible feeling of anxiety, the blood vessels in my neck felt like they were going to explode, my neck and face would go bright red and I would have difficulty swallowing, breathing and get terrible heart palpitations. Awful.
If I stayed off the pulmicort I had no anxiety or panic attacks. If I stayed off the pulmicort I had a tight chest that was very restrictive and occasionally the left side of my airways seem to narrow and 'block up'. Sometimes, I kid you not, I could feel the left side of my airways feel 'damp-like' as if I was sucking through a wet paper straw. The pumicort used to dry my airways - in fact, it felt it dried them too much.
I tried to explain this to several GPs but they all looked at me as if I was nuts - they had never heard of pulmicort causing this. The more I took the pulmicort the worse my panic attacks became and when I was free of the pulmicort I had no anxiety or panic at all. I put up with this for years and, as I now have a great GP, I managed to get him to prescribe me something else.
So, about 2 months ago I stopped the pulmicort and was put on oxis formoterol along with my bricanyl. I can take the formoterol, one puff twice a day, with no anxiety problems at all and no sign of panic. I thought the problem was solved. Or so I thought.
I went out for a long walk along the local beach one-day about 4 weeks ago and felt fine, was breathing wonderfully and thought my life had turned the corner when... BAM! I got the most awful chest pains in the left hand side of my chest and could not walk more than a few steps. Before I knew it I was in A&E being admitted to a ward where a cardiologist checked me over for a week. They ran all sorts of tests on me and made me do a treadmill test - which I admittedly got anxious about, only completed 7 minutes of it because I got panicky. (Well, they did tell me I was going to do this test 24 hours before I did it so I had plenty of time to worry about it plus, when I was on the pulmicort back in January, I had had a big panic attack on a treadmill in my gym and had not used a treadmill since - so perhaps my anxiety is thus explained.)
The good news is that my heart is fine but the cardiologist thinks I have anxiety / muscular skeletal issues going on. ( I found that if you ever have been diagnosed by one Doctor with anxiety /panic attacks it becomes a get out of gaol card for many Docs ). The cardiologist and his team were great, refusing to let me leave hsopital until they were certain I was fine.
I don't find the formoterol to be as good in relieving my tight chest as the pulmicort - yes, I have no anxiety / panic feelings with it, and it also appears to keep the left side of my chest/ airways unblocked, but I find when I am out walking that I often need to take my blue bricanyl reliever also. Sometimes I have to take the bricanyl several times and, whether it is the formoterol or the bircanyl or both, my entire chest area (rib cage, sternum, back) seems incredibly sore as if inflamed. My back is now very sore where my lungs are, again as if inflamed, and when I drink a hot drink I can feel it travelling down my throat, beind my sternum area, as being very sore indeed. It is almost ""ouch"" out loud sore.
So I don't know what to do. This, I admit, is getting me down. I find my life very restrictive and I am increasingly unfit as I cannot do any good aerobic workouts. I have put one and a half stone on in weight, mostly around my belly, whereas 4 or 5 years ago I was Mr. Action Man running, cycling and walking for miles. I will be frank and say this is depressing me. I am afraid to go back to the GP because I think he will think that I am a hypocondriac, or put it down to anxiety and I just won't get anywhere. I saw an asthma nurse, for the yearly asthma check-up, about a month ago and she seemed to offer no better advice than pulmicort - but I am 10% certain that pulmicort causes me the anxiety and panic attacks.
One last thing which I think is relevant.
I never had any wheezing prior to going on asthma medication. If I take either pulmicort or formoterol within a day or two I can hear and feel myself wheeze when I do simple exercises such as touching my toes repeatedly or side tilts. If I stay off asthma medication the wheezes quickly stop. I can't explain this as I thought wheezing was an asthma symptom that you took the medication to prevent and not that taking the medication would actually bring it about?
About 2 years ago, for about 6 months in a row, I kept a twice daily asthma diary taking peak flow readings twice a day. The bizarre thing that I found then was that when I began to take pulmicort my peak flow reading would rise briefly, then level off and after a few days it would begin to fall and I would get more and more breathless. On several occasions I persisted with taking pulmicort for a week or two and my breathing got so bad at various points I could not even get up a flight of stairs or hold a conversation. Once I stopped the pulmicort the breathlessness quickly went in a few days. How bizarre is that?
Sorry to rant on everyone but I really need the help and advice of others now as I am at a dead end. I do wonder whether I have actually asthma or not? Or perhaps I have some kind of seasonal asthma? Or whether it could be something else like an infection or an inflamation of, well, I don't know what.
Thank you for taking the time to read this. I would welcome some advice. Please, no flames as I am at a low point now with this.
Welcome to Asthma UK, I hope you’ll find this site a good source of information and support. I am sorry to hear that you have had such a rough time of late with your asthma and with the panic attacks. I hope that we can offer you some support, although as I am sure you appreciate, our ability to offer individual medical advice over the internet without actually seeing you or having access to your medical records is limited.
I am not sure why you are worried about being flamed – we take flaming very seriously, and do everything we can to prevent it from happening and deal with it when it does. If you have any concerns of that nature, please do send a Personal Message to myself or one of the other moderators.
First of all, one thing that I say to all new members – a message board such as this one invariably attracts a disproportionate number of people with difficult or severe asthma. You may read accounts of poor control, multiple medications, hospital admissions and even Intensive Care admissions. Please do not be frightened or put off by this. Such experiences, whilst unfortunately common among our board users, are rare in asthma as a whole. The vast majority of people with asthma – perhaps 95% - can be completely or almost completely controlled, with minimal or no interference with their day-to-day lives, once the right combination of treatment is found. That should be the goal of asthma treatment. Asthma should be taken seriously – in the worst cases, it can be fatal – but it should not have to rule or ruin your life.
Having said that, it does sound like you have had a difficult time over the last few years. I can understand why your doctors are a little confused about your symptoms – what you are describing does sound quite unusual. I have not heard of Pulmicort causing panic attacks in quite the way that you are describing, and I am at a bit of a loss to think of a plausible biological mechanism to explain it. In particular, the speed of onset of the effect sounds very rapid – Pulmicort would not normally be expected to have any effect at all within an hour of using it. Oral steroid tablets can occasionally cause anxiety, but generally only at fairly high doses.
I wonder whether there is any psychological reason why you are having these panic attacks? This suggestion is by no means intended to dismiss your symptoms – obviously they are still very real and problematic to you. Panic attacks are commonly caused by underlying psychological problems, though, and treating these underlying problems may provide an alternative way of treating the panic attacks. Are you anxious about the idea of using steroids, or are you generally very anxious about your health? The fact that you had a panic attack whilst having the treadmill test might suggest that you have a high level of anxiety about medical problems and procedures. This might be something that you could address with counselling or Cognitive Behavioural Therapy – your GP would be able to advise on what is available to you.
I am sure you are aware that inhaled steroids are very safe drugs. They are very close in nature to your body’s own naturally produced corticosteroid hormones, and are not at all similar to the anabolic steroids abused by some body builders. Inhaled steroids act directly on the lungs, where they are needed, and very little of the drug gets into the body as a whole – therefore the side effects are usually minimal. If you do have anxieties around using steroids specifically, it might be worth you discussing this further with your doctor to see if your mind can be put at rest.
As I am sure you know, inhaled steroids have to be taken on a regular basis to have their best effect – the anti-inflammatory effect takes a while to build up and is only maintained when the inhaler is used every day. Using it ‘sparingly’ is unlikely to have much of an effect. Certainly it will not give you the best chance of beating your asthmatic symptoms. I am not sure why you have experienced a drop in your peak flow and worsening of your symptoms when you have used the Pulmicort for a prolonged period. That is obviously something that would need careful monitoring if you were to try inhaled steroids again. There is a phenomenon known as ‘paradoxical bronchospasm’, where use of inhaled steroids, particularly aerosol (‘puffer’ style) inhalers, can cause transient tightening of your airways. This is usually an immediate and short lived effect just after using your inhaler, not a progressive effect, though. The other possibility – and again, this is very rare – is that there is something in the propellant of the inhaler which you are sensitive to. This could be alleviated by changing to a different brand of inhaler.
I am concerned about your current asthma treatment. If I understand it correctly, you are currently on formoterol (Oxis), which is a long acting beta agonist, together with terbutaline (Bricanyl) as your reliever, and no other medications? There is good evidence to suggest that use of a long acting beta agonist without inhaled steroids increases the risk of severe attacks and asthma death in the long run, possibly because the inhaler is treating the symptoms but is not treating the underlying airway inflammation. The Commission on Human Medicines and the FDA have both put a warning on the use of long acting beta agonists in this way. The mainstay of asthma treatment, in all but the most mild cases, is the use of inhaled steroids to treat the airway inflammation that underlies the condition. You may well be putting yourself at increased risk of severe attacks.
I would suggest you ask your GP whether you can try an alternative inhaled steroid, perhaps with a different inhaler type. There are several different inhaled steroids, and it may be that one of the others would suit you better than Pulmicort. As I said, some sort of counselling or talking therapy to address any underlying anxiety issues may also be helpful. It is very common to experience anxiety and even panic attacks in association with asthma – there are many people on these boards who have similar problems. The two conditions do interact, and this can be quite difficult in terms of your control, as you have found, so it really is worth trying to get this issue sorted.
Regarding your lack of wheeze before taking the inhalers, and the increased wheeze while you were taking them; again, this sounds a little unusual. There are a couple of possible explanations – again, it could be that you are experiencing the ‘paradoxical bronchospasm’ that I referred to earlier. If this is the case, the increased wheeze would tend to be experienced immediately after using your inhaler, and would be associated with feeling more tight-chested and unwell.
However, you seem to be describing a situation where you feel that generally, your tight-chestedness and breathing difficulties are better, but that you are noticing increased wheezing noises. Sometimes, when someone has chronically narrowed and inflamed airways, they will not make the usual wheezing noise, because they are not moving enough air through the small airways to make a noise. Instead, their chest will just sound very quiet, with poor air entry. This is more commonly seen in an acute severe attack, where it is known as ‘silent chest’ and is a serious sign. However, it can also be seen chronically in some people. It’s not really known why some people develop the characteristic wheeze and others don’t, but there are a few ‘non-wheezers’ on these boards. When you take medication to open your airways, you are then able to move more air, and the characteristic wheezing noise may then be heard – so the wheeze may imply that the narrowing of your airways is partially, but not completely, treated.
In terms of whether you actually have asthma at all, your symptoms and response to the medications you have tried certainly sound suggestive of asthma, although as I have said, there are things which are unusual and don’t quite fit together. There may be other conditions such as reflux, vocal cord dysfunction or allergies contributing to your problems. Infection is very unlikely, as you have experienced problems for a long time. If you do try an alternative inhaled steroid, and do not get good relief, or run into the same problems tolerating it, it may be worth asking your GP to review this further and possibly consider referring you to a respiratory specialist for further investigation.
Your other symptoms like the soreness of your chest area may well be because your asthma is not as well controlled as it could be. However, it might be worth discussing these symptoms with your GP if you have not already done so. The pain on swallowing could possibly be related to gastro-oesophageal reflux, which can interact with and make asthma worse, and requires different treatment, so that is definitely worth mentioning.
Hope this helps – I am sorry not to be able to come up with any easy answers, but like a lot of people on here, your story is not straight-forward! I hope you feel that you can at least get a sympathetic and understanding ear here, even if we cannot necessarily solve all your problems.
Take care
Em H
Hi Em H,
Thank you ever so much for taking the time to write such a thoughtful, detailed reply. I read it with great interest.
Firstly, the 'flaming' comment was simply a gut reaction to anywhere that I post online as these days, sadly, it seems that there are numerous sites where if you post about an illness or a problem that you might be having that there are people ready to jump down the throats of those seeking help. You know what some people are like, they take pleasure in putting other people down, especially in an online sitaution. So glad to hear that this forum is not like this
I know that steroid inhalers are supposed to be safe but that does not seem to be borne out by a great many people who, on various websites, do post about the adverse and really negative reactions they get to inhaled steroids. Sadly, it seems the medical community seems to continue to trot out this message that steroids are safe - I assume the drug companies tell them this - without actually investigating the situation for themselves. There are numerous websites now where, for instance, numerous people have posted about the really nasty side-effects of pulmicort - anxiety, panic, aggressive behaviour, raised blood pressure, etc - that they did not have prior to taking pulmicort, which only started after they began using pulmicort and which stopped once they stopped using pulmicort. I am not alone.
So I do find it sad, and indeed dangerous, that there are so many in the medical community who continue to state that steriod inhalers are safe when they quite clearly are not.
(I am not sure about other inhalers but wasn't there one that was in the news last year over fears of it increasing suicidal tendencies in people and a warning was issued about it? I doubt that it can be considered safe but probably, prior to that development, it was considered so? Anyhow, I digress.)
I also know that inhaled steroids take time to build up in the body before they begin to work but that is simply an aside to the problems that I was experiencing - in so much that I would get a terrible reaction within hours, sometimes within an hour, of taking a puff of pulmicort. If I continued with pulmicort I would simply get more anxious, more panic attacks, more pent up and basically feel more and more terrible the longer I took it. As soon as I stopped taking pulmicort such symptoms would disappear within a few days to a week. I have found wesbites with others posting about similar experiences using pulmicort so I am not alone in this.
Prior to starting on pulmicort several years ago I was the most chilled out, laid back person going. I remember clearly thinking, sitting on a beach one Summer, that the only thing I had to be anxious about in my life was that I had nothing to be anxious about. Then I was diagnosed with asthma, began pulmicort as a treatment and suddenly found myself, for the first time ever, suffering from panic attacks, anxiety, the whole nine yards and, pardon my Anglo-Saxon, it has been bloody horrendous! Now I have stopped taking the pulmicort my anxiety has gone and I feel more and more like my old self. In fact, I am regularly commenting to friends that I feel 17 again, except that I cannot run, cycle and even walking long distances is now difficult.
It is a terrible thing once the medical community sticks 'anxiety' as a label on you that they begin to put it down for everything that you feel is wrong. That is both frustrating and annoying. Quite frankly, it is a kop-out. You begin to feel that if you went to see a Doctor about the 'flu or zits that it would be put down to anxiety, that if you were in the A&E with a chopped off leg that the staff would look at you and tell you that it is all anxiety and in your head. It is both patronising and condescending - please note, I am not aiming this at you but at the wider medical community - and also frankly downright dangerous.
As for myself having a panic attack on the treadmill in hospital, well, I think I explained in my original post while I had one and also, sadly, once you do develop panic disorder that reacts to certain things - treadmills are a big no no for me now - it is damn impossible to turn that 'panic switch' off in the brain. The panic attacks are a symptom of the pulmicort in my personal opinion and not the problem in itself. I am 100% convinced that I would never have suffered from anxiety and panic attacks if I had never been put on pulmicort. Sadly, I am now sensitive to panic attacks because, simply, that switch has been triggered in my brain. They are dreadful, I would never wish them on anyone, but once you have suffered them then you have them as an ever-constant memory in your mind. Sorry, I am ranting now but am simply trying to explain things. Phew
So here I am left with this tightness in my chest. I took on board about what you have said about the medication perhaps opening up my airways enough so that I begin to wheeze - that is something that has crossed my own mind and I am glad that it is a thought that crossed yours also - almost as if my airways were too narrow even to wheeze.
I have to say that I am concerned about your comments about the medication that I am on and how I have a lack of a steroid medication as a preventer? Am I right in thinking that both my bricanyl and my formoterol are simply relievers? If so, I think I need to go back and talk to my GP about finding another steroid inhaler which, hopefully, is different to pulmicort in whatever ingredients are in it. I am still confused by the fact that my breathlessness can be non-existent prior to taking a preventor but then I become more and more breathless the longer I take an inhaler.
I have tightness in my chest when I walk - can no longer run - and I can only explain that, in my limited medical knowledge, as being asthma. But I don't wheeze or get breathless until I take asthma medication. I am at a loss.
One last point, and apologies if this sounds silly, I have wondered whether my body has got used to reduced airways/lung power and when I take medication to open up my airways it comes as such a 'surprise' to my lungs that I effecitvely end up over-breathing or hyper-ventilating - i.e. the more relaxed airways simply allowing more air in and out of my lungs being the cause of the breathlessness?
Thank you Em H ever so much for writing your wonderful reply to my post. I really appreciated it and am grateful for your thoughts and suggestions.
Best wishes,
Jan.
Oh, one thing I forgot to mention is that when I took pulmicort my resting heart rate was always 10 beats or so per minute higher than when I am not on it. It would be in the mid 80s when on pulmicort and often in the low 70s when not on it.
I also found it very hard, when exercising, to try and raise that heart beat above 100 beats. It just would not go up which was a worry in itself. My GP, who is a marathon runner looked a bit flummexed by this, but when I am not on pulmicort for a few weeks I found that my heart could get up in the 160 - 170 beats per minute range when I used to go out cycling.
Hi Jan,
I'm glad that my reply was of use to you. I'm sorry to hear that you've been flamed on other sites. I won't say that flaming has never happened on AUK, but we are generally a very friendly bunch and, as moderators, we do keep a close eye on things to try to maintain that friendly environment.
You are right - terbutaline (Bricanyl) is a reliever, and formoterol (Oxis) is a long acting version of terbutaline, a reliever/'protector'. Both are bronchodilators, ie they open up the airways, but neither have anti-inflammatory action to treat the route cause of asthma. That is why there is a concern over the safety of treating asthma just with these drugs, which has been borne out by large scale studies. Please do discuss this issue with your doctor - there are four other inhaled steroids (apart from Pulmicort, which contains the steroid budesonide) with slightly different ingredients and modes of action that you could try. If you are unable to find an inhaled steroid that you can tolerate, I would think that would be sufficient indication to ask for referral to a respiratory specialist for your ongoing treatment.
Asthma is a highly variable condition, as a quick perusal of this forum will show you! Chest tightness, wheeze and breathlessness are obviously the most common symptoms, but some people don't experience this at all, and may have coughing as their main symptom, for example. The diagnosis of asthma is mainly a clinical one, and is usually made based on some of the typical symptoms plus a response to a reliever beta agonist inhaler such as terbutaline (Bricanyl) or salbutamol (Ventolin). The peak flow monitoring that you have done can be very useful in making the diagnosis - a very variable peak flow, typically with big drops in the morning, is characteristic of uncontrolled asthma. It's worth noting, though, that asthma is an episodic condition, so it is entirely possible to have a normal physical examination, normal peak flow and normal lung function tests on a given occasion, and still have asthma. Just one of the ways that asthma likes to catch us out!
In terms of whether opening up your airways for the first time in a while could be causing you to hyperventilate and feel breathless for that reason - it is extremely difficult to say whether you are hyperventilating, without seeing you and doing blood tests and so on during an acute attack. I understand what you are getting at with the idea that taking medication to open up your lungs could be a 'surprise' to your lungs and cause you to hyperventilate, although it is more usual to hyperventilate as a response to bronchospasm than as a response to treatment for bronchospasm. Hyperventilation (by which I mean abnormal/inappropriate over-breathing or rapid breathing, not the sort of appropriate increase in respiratory rate that is seen in a severe asthma attack) is very common in association with asthma, especially newly diagnosed asthma where you are still learning how your body responds to it, and it is also very common in anxiety. Many people hyperventilate inappropriately during an acute attack, either as a learnt response or due to anxiety - in fact, I would go as far as to say that most asthmatics have done so at one point or another; it's an almost universal experience. However, it is something that needs dealing with - not only does it increase your perception of breathlessness and make you feel unwell in other ways (typically pins and needles in your hands, feet, and around your mouth, dizziness, sometimes spasm in your hands), but it also makes asthma worse. The rapid movement of air in and out of your chest irritates your already sensitive and twitchy airways, and they also dry out much more rapidly, and the result is worsening bronchospasm. A sort of vicious cycle develops, because of course the worse the breathing gets, the more panicky and stressed you get, and the more you are likely to over-breath. The treatment for this - apart from treating the bronchospasm with your reliever inhaler, obviously - is breathing exercises to retrain your brain to respond appropriately during an attack, rather than making you hyperventilate.
It would be inappropriate and potentially dangerous of me to recommend any sort of breathing exercises without being able to see you and properly assess you, and I am not going to suggest that you make any efforts to breath differently or more slowly at the moment, until you have been properly assessed. It will not do any harm, though, to try and focus on *how* you are breathing during an attack, rather than how fast you are breathing. You can try this when not having an attack, or during a mild attack when you have taken your reliever inhaler and things are getting under control. Obviously, do not try this during a severe attack or if your symptoms are not responding to your reliever, or if you are too breathless to talk in sentences - in that situation, you need to be getting emergency medical help.
Try placing one hand in the centre of your upper chest, and one hand on your abdomen. Many people, if they have a tendency to hyperventilation, find that the hand on the upper chest will move more when they are breathing in than the hand on the abdomen. Try and focus on breathing in such a way that the hand on your abdomen is moving up and the hand on your chest is staying relatively still. This will ensure that you are breathing deeply from your diaphragm and using all of your lungs. It may be difficult at first, but the more you do it, the more you will get into the habit of doing it during an acute attack. DO NOT, for now, try any exercises designed to reduce the speed at which you are breathing. There are exercises that can be very effective in doing that, but they need to be appropriate for you, and they can do more harm than good if they are not suitable. The above exercise will not do you any harm, although of course if you are feeling unwell you should stop.
If you do feel that hyperventilation could be contributing to your problems (and based on what you have said, I would be surprised if it were not, at least some of the time) then you could ask for a referral to a physiotherapist, who will be able to assess your breathing patterns and recommend exercises to change your breathing. If you have had arterial blood gases done at any point when you attended A&E with your asthma (a rather painful blood test usually done from your wrist) these can also be useful for your doctor or physio to assess whether you are hyperventilating. As with the exercise above, it may be quite difficult to put these exercises into practice, at first, especially when you are having a bad attack. The more you do it, though, the more you will find that it becomes second nature to do the exercises, even during times when your asthma is bad. Treating your anxiety and panic attacks will also help with any element of hyperventilation.
I accept what you say about your anxiety and your Pulmicort treatment, and I can understand how the experience of a panic attack can then create a potent trigger in your psyche for subsequent panic attacks in similar situations. Indeed, I have experienced a similar sort of thing myself in relation to Intensive Care admissions for severe asthma attacks, so I can relate to the disabling nature of this anxiety. However purely physiological and pharmacological you feel that the initial trigger for the panic attacks was, though, the fact remains that the manifestation of this side effect is psychological, by definition, so I still feel that it is likely that you would benefit from some sort of talking therapy, perhaps Cognitive Behavioural Therapy, for your panic attacks. This is not to dismiss your very real symptoms or say that they are all in your mind - just to say that this may be the most appropriate treatment for them. As you probably know, medication is of limited use in treating panic disorder, and talking therapies are the mainstay of treatment. It may be that a combination of a different steroid inhaler and the correct treatment for your panic disorder might help to get things under control and enable you to take your inhaler. I know it might not sound like an ideal solution, but often in medicine there is no ideal solution. Many of us are taking medications to counteract the side effects of our asthma medications - for example, I take metformin for diabetes caused by taking oral steroid tablets for many years - and this could be seen as a similar sort of approach.
Whilst I acknowledge your experiences and the experiences of other people on the web who have had problems with Pulmicort, I do feel that I have a responsibility from a public safety point of view to reiterate how safe inhaled steroids are for asthma, as a general rule. There will always be a few unfortunate people who will have idiosyncratic bad reactions to a drug - I am in no way at all denigrating or belittling the experiences of these people, but from a medical and statistical point of view, it is very difficult to show an association between the drug and the sort of experiences you are describing. Obviously, there is a big difference between the sort of personal conviction of cause that you will get from the experiences you have had (and I do believe from what you have said that that is very real) and being able to statistically prove a significant side effect. Several million people, worldwide, use inhaled steroids for asthma, and there are extensive and long term safety data for the drugs. They do have minor problems, especially at higher doses, like any drug, but generally they are very very safe, and indeed are life-saving drugs. There is no large scale evidence of the sort of side effects that you are describing (and again, that is not to belittle your experiences - there is a difference between individual experiences and large scale evidence, and any doctor treating individual patients, rather than just considering statistics, understands the importance of anecdotal individual evidence as well as what the studies show).
There is no conspiracy on the part of drug companies to hide side effects such as you are describing. Drug companies are usually very open about the sort of side effects that can be expected with a drug - to the point, often, of listing every odd symptom that their study participants had during the study, whether or not it was related to the drug! Any drug company that did try to cover up side effects would be very quickly discovered. Doctors are also very much in the habit of questioning drug company sponsored trials and drawing their own conclusions. There have been several large scale *independent* studies looking into the safety and efficacy of inhaled steroids in asthma. In addition to this, doctors are very used to being vigilant to the signs of unexpected side effects, and reporting them when they occur.
I am sure you realise that I am not saying all of this as a personal attack on you or as a way of trying to refute your experiences. I do believe that what you have experienced is a very real effect, even if I am at a slight loss to explain it completely, medically speaking (I am not arrogant enough to think that I can explain everything from a medical point of view!). I am saying all of this because I do feel that I have a responsibility, on this forum for our leading national asthma charity, to make sure that people have the correct information about asthma medication and the risks associated with it. Bluntly, asthma can kill, and if one person is discouraged from taking their inhaled steroids by reading this forum, then that is one person that we have done a great disservice to and put at increased risk of severe symptoms and death.
Incidentially, the story regarding increased risk of suicidal tendencies concerns another asthma drug, montelukast (Singulair), which is a tablet in a class of drugs known as the leukotriene antagonists, which work directly on part of the allergic process in the body. The background is that there have been a few reported cases of young people experiencing anxiety, depression, and in a few cases, suicidal behaviour, when they have recently started taking montelukast. It is not known at this stage whether the suicidal behaviour is due to the drug or not - there are many possible confounding factors, including the fact that both asthma and depression are becoming more common in young people - and therefore there are bound to be people who experience the onset of both at once - and the fact that starting someone on montelukast may happen at a time when their asthma is deteriorating and is difficult to control, which is obviously a potential trigger for anxiety or depression in itself. The USA Food and Drugs Administration are taking this seriously and are investigating the potential link, but they do not yet consider the risk serious enough to put a 'black box' warning of potential serious side effects, and they certainly don't recommend that anyone stop taking the drug at this stage.
In general, I would just like to reiterate something that I have said many times before (and which I am sure all the regular readers are thoroughly bored of!) - no-one should stop taking any medication without discussing it fully with their GP first. Stopping medication abruptly can be dangerous for all sorts of reasons, not least because of the danger of a severe asthma attack.
Well, I have gone on at quite some length now, which I apologise for - but I did feel that I needed to make those points. I do think that it is worth you persuing things with your GP and seeing if you can find an inhaled steroid that you can tolerate - I am sure that your life would be improved by being on one. The goal of asthma treatment should be that you can do what you want to do, with little or no limitation on your day-to-day life - this includes running and other sporting activities. This goal is acheivable for 95% or more asthmatics, and I would not want to see you or anyone else stop fighting for this goal until every avenue of treatment has been exhausted - which is far from the case, with you.
As I said, I would also give consideration to asking for a physio referral for breathing exercises (I do not know how readily this will be available to you locally, or if you have any facility to see a physio privately) and perhaps some sort of referral to deal with your panic attacks, should they be a problem again. I do hope you get on alright and get better control so that you can get on with your life. Do let us know how you get on.
Take care
Em H
Hi Jan,
I think I cross-posted with your addition, sorry, I've only just spotted it.
Again, I am at a loss to explain the effect on your heart rate! Beta agonists such as terbutaline (Bricanyl), salbutamol (Ventolin) and formoterol (Oxis) have the effect of raising your heart rate. This is almost universally seen. Inhaled steroids should not really have any effect on heart rate, either resting heart rate or ability to raise your heart rate with exercise. Once again, just part of the varied and individual way in which people can respond to these drugs!
Em H
Hello Em H,
Thank you again ever so much for taking the time to write such a detailed and thoughtful reply.
First of all, can I trouble you for the names of the 4 other other steroid inhalers other than pulmicort please so I can go and ask my GP for one of them this week as an attempt to get this sorted. I am sorry to ask but I always get the brand names and the drug names mixed up and I don't want to be asking my GP for a reliever by mistake - he usually talks in drug names and I talk in brand names and there is room there for confusion
As ridiculous as it sounds, I did try one single puff of my pulmicort yesterday evening, partly after reading what you had written here but mainly because my ribs / chest felt so painfully sore, that I just had to try something to reduce the pain. I actually feel slightly, only slightly, less sore this morning and I do wonder whether I am simply very sensitive to pulmicort - I am sensitive to most other drugs I have taken over the years so... Anyhow, I think I do need a steroid of some sort for the inflamation and I need one other than pulmicort to try longer-term.
As for the breathing exercises - yes, I do them and had to re-learn to breathe properly about 3 years ago. I had become a 'chest breather', as so many of us do, and I bought a fascinating book by a Kiwi Doctor who had examined this issue and had concluded that millions of us no longer breathe properly. I have done all the lying down with a book or a hand on my stomach and breathing up and down. I also realised, as this book oddly but correctly pointed out, that many of us breathe incorrectly due to being 'fashion tarts' and wearing tightly fitting clothes that do not allow our stomaches to move in and out when breathing. Of course, most of us become chest breathers simply through the stresses of modern life. I have become a bit of a chest breather watcher now and I see chest breathers wherever I go.
As for the cognitive behaviour therapy - yes, been on that for 3 years though no longer now as I have been delcared 'fixed'. I have gone through an awful last 3 years that culminated with my Mum, who I looked ater for a long time, passing on. I won't go into things but I simply fell apart and if it was not for my GP, and a wonderful CBT Counsellor that my practice has and to whom my GP referred me, I doubt I would be here today to type this to you. So I am a bit of a CBT convert also and regularly am called on by friends for advice on stress and anxiety as I have not only read the books on it but have probably added a chapter or two myself. My former Counsellor, who long ago told me I was 'fixed' (lol) tells me that I should consider becoming a CBT Counsellor myself because I now know so much about it. A bit of the poacher turned game-keeper.
This is why I am so adamant that my panic attacks are caused by pulmicort as I have literally spent the last few years doing detailed tests on what happens to me when I am on pulmicort and when I am not. Yes, I admit that when my Mum was in ICU, that when I was grieving for my Mum that I was so stressed and anxious that everything was mixed up and it was impossible to state what was causing what.
Now though, after coming through the worst years of my life and simply no longer having anything to worry about or feeled stressed about I can clearly sit down and clinically point to panic attacks only happening when I am on pulmicort and simply not happening when I don't take it. Alas, when I don't take it I get the chest tightness and that usually progresses to feelings that my lungs are somehow inflamed and my ribs / chest / back / becomes very very sore.
I really appreciate your time and help Em H. Simply 'talking' through these issues with yourself has helped me to clarify a great many thoughts and options on this matter and I am very glad that my initial post raised thoughts in your mind that I have constantly been thinking about. I think I need to go and try different steroid inhalers to get this sorted and get some quality of life now... so I will go visit my GP this week.
Thank you again ever so much,
Jan.
Hi Jan,
I'm sorry to hear about your mum's illness and passing and that you have had such a difficult time of it. It sounds like you have had good treatment for all of that, though.
As you know, steroid inhalers can be prescribed by the generic name of the drug or the brand name. If a drug is prescribed purely by generic name, the pharmacy can supply any brand of this drug, and will normally supply the cheapest. Since you have had problems with Pulmicort, you may wish to ask your doctor to prescribe by brand name, so that you are getting exactly the same inhaler each time in terms of the non-active ingredients such as propellants and additives. It should not normally make a difference, but a few people who are sensitive may find that it does.
The inhaled steroids that are available on prescription in the UK are:
Various compound preparations also exist that contain an inhaled steroid and a long-acting beta agonist, eg Symbicort - budesonide and formoterol, and Seretide - fluticasone and salmeterol.
There is no particular evidence that any one of these inhaled steroids is better than another overall, although people do find individual differences in the way that they respond. Beclometasone is probably the most commonly prescribed steroid inhaler, and has also been around for the longest. Ciclesonide and mometasone are relatively new, so their side effect profiles have not been as fully characterised as the others, although they are believed to be very safe.
Hope this helps
Em H
Thank you Emily. I will go and see my poor, long-suffering but very good GP tomorrow... if I can summon up the courage... or on Wednesday.
Sometimes I feel like I am taking up too much time but I think I need to be, how can I say this, a tad 'annoying' now in order so I can get this sorted and get some quality of life. I can't cycle, I can't jog and even walking at speed is a problem now. I have even bought a weighted hula hoop this week just so that I could get some cardio/aerobic exercise in the house.
Thanks again,
Jan.
Hi Emily,
Just to let you know that I went to see my GP this morning, had a chat with him, (I am lucky in that I do have an excellent GP), and he has prescribed me... let me get this right...
1 Salmeterol with Fluticasone dry power inhaler 50 micrograms and 250 micrograms, 1 puff twice a day...
...to see how I get on with that. He was very nice about it, as he has been all along, and told me that there are other inhalers on the market to try if this one does not work... and let's see how I get on with this one.
It is the oddest looking thing.... reminds me of a musical harmonical-type device that I had about 30 odd years ago as a kid... I got quite a surprise when I took it out of the book as I was expecting another turbo-inhaler... Oh well, it comes in lovely shades of purple which, being an Aquarian, is just my colour... more or less identical to the purple used on the forums buttons on here
Anyhow, he has told me to take this instead of the pulmicort and the separate formoterol and to keep my bricanyl as a back-up reliver, for emergencies, etc.
So, God willing, fingers crossed and may all the Sainsts and Angels in Heaven, who I know are very busy, but if they have a moment I just hope that at least one of them might arrange for this to actually work for me so I can get my life back.
Thanks again Emily,
Jan.
Hi Jan,
I am glad that you have gone back and got this inhaler - it is otherwise known as Seretide (as it is fluticasone (Flixotide) and salmeterol (Serevent)) and is one of the combination inhalers that I was referring to. You are right, it is very odd looking, like a frisbee or UFO - and is a most beautiful purple colour. I used to take this inhaler for years, until I was switched from salmeterol to formoterol (I was not switched because there is any evidence that one is better than the other, just because my control was poor). I think this is an excellent inhaler, and please don't be put off by the fact that it didn't entirely work for me, because my asthma is particularly brittle and difficult. I know many people for whom Seretide has worked extremely well.
I do hope you get on okay with it, do keep us updated.
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