Asthma - alternatives to corticosteroid preventers?

[peliroja]

I've been struggling with my asthma recently, requiring hospital visits, nebulisers, prednisone and inhaled corticosteroids - first in South America (triggered by a cold, humid environment) and recently in New Mexico in a hot, dry, high altitude environment with lots of sagebrush and grasses. It's put something of a kybosh on our world tour, to put it mildly.

I visited an asthma/allergy clinic today for tests. Skin tests showed that I am severely allergic to 'grasses' (a mixture of different kinds) but not to trees, nuts or wheat. I also had a 'methacholine challenge' test which showed definitively that I do have asthma. I was given more prednisone and switched from a preventer called Dulera to one called Advair (fluticasone).

I''m sure that the Dulera caused the horrid side effects I'm currently experiencing: never-ending tiredness, dry mouth, aching muscles. I'd like not to have to take these preventers at all (I've not had to take them since I was about 14).

Other than avoiding my triggers, does anyone have advice on alternatives to these drugs? I've been recommended acupuncture, bee sting therapy, seeing a naturopath, etc, but am not sure about any of them.

I'd love to hear people's advice and personal experiences.

[clarion]

I'm sorry to hear about your illness, and all the sorrier because it has affected your tour.  My nervousness about my asthma (specifically, what might happen if I have an exacerbation abroad) has been one of the factors which has prevented me from travelling.  But i suspect, from your description, that my asthmais more aggressively medicated than yours.

You are right to be cautious of alternative approaches.  As far as I am aware, there is little to no evidence of any benefit from any of these therapies.

I'm not familiar with Dulera, but a few minutes Googling tells me it is a combination inhaler, with a Long Acting Beta2 Agonist and Corticosteroid.  These are very popular right now, and the most used seems to be Seretide, which combines salmeterol and fluticasone propionate.

There are a lot of positives to having a combination inhaler - not least only having to keep track of one, rather than two - but I found that the escalation in my Asthma Plan had too few steps with combination, whereas we had more options with maintenance doses and escalation if separated (though I am on an extremely high dose of both for maintenance).

Other alternatives you might wish to explore can get you away from inhalers to tablet form.  Theophylline can be very effective, and I found it good in combination with my inhalers.  Unfortunately, it is related to caffeine, and can cause disturbed sleep patterns.  It certainly did with me, as I was spending at least two hours awake each night, which was unsustainable.  OK, so I know I'm typing this at 5am, but that's beside the point

Another oral medication, which I take now, is Montelukast Sodium (Singulair etc), which seems to have very few side effects, though there can be serious mood-affecting ones.

It is usually used in conjunction with inhaled steroids.

I have to say that I utterly hate steroids - inhaled and oral.  But they are effective, and there is no doubt that my life would be very different (or ended) without them.  So I reluctantly include them in my regime.

And the inhaled steroids have fewer of the nasty side effects than oral ones, so it's in my interest to maintain my high levels of medication to stabilise my condition as far as possible. 

I hope you can find a solution that suits you, and lets you get on with life.

[fred the great]

I found that combination inhalers, Berodual in my case, certainly helped me whilst Ventolin appeared to give no benefit. I also plan to try the tablets next.

As to Theophylene, the older one gets, one needs to be very careful in it's use, half the recommended dose being the norm as it has been known to cause cardiac arrest. Anti-biotics are also known to enhance the effects of Theophylene so I stopped taking this drug because I wasn't gaining any apparent benefit and feel it is far too risky for me. By contrast my BIL, a big strapping guy has used Theophylene for a number of years with no issues.

[hellymedic]

I am no asthma expert. Inhaled steroids entail a much smaller dose than oral.
You asthma seems to need quite assertive management though.
In the 'Bad Old Days' some of the patients I treated became 'steroid wrecks' due to long term oral or depot intramuscular steroids. I would wish that on nobody but feel you would benefit from inhaled preventers as part of your treatment.
Clarion lives with his asthma and has the experience and knowledge to advise wisely.

[Sergeant Pluck]

You are right to be cautious of alternative approaches.  As far as I am aware, there is little to no evidence of any benefit from any of these therapies.

Seconded. It's all woo.

It is quite unusual for someone who has reasonably frequent exacerbations  not to be on a corticosteroid "preventer" and I guess that's why putting you back on it was one of the first things that they did. You could try some alternatives of the same general class, but most people find that they adapt over a period of time.

Stick with the evidence-based treatment.

[twiddler]

It's quite a tricky one, i've been asthmatic since i was a toddler, generally it's not a big problem for me now, and i too use Seretide which is remarkably powerful in its effects, to the extent that i like to minimise use.  I'm sure most people prefer not to have to use medication.
I have read about the Buteyko method, which seems tremendously popular in Australia, i played with the techniques but didn't pursue it seriously.  But having had experiences where exercise has eased mild symptoms, i don't reject Buteyko.  I also find meditation, aka mindfulness, useful as it can help to increase calm, reduce anxiety and sometimes allow me some insight into the cause of my anxiety, of course this is for the medium to long term benefit, i'm lucky not to have had any full on attacks for a few years but if i get serious constriction i still reach for an inhaler rather than sit down cross legged.   
Best of luck.

[peliroja]

Thanks, everyone, for the informative responses. I had been slightly sceptical of the 'alternative' therapies which were recommended by everyone we spoke to (we are in Portland, after all!) but some of them did sound tempting. It's good to know that what I've been prescribed is along the right lines.

Unfortunately, I still feel that the new corticosteroid (Advair) is giving me funny side effects, though they're not as severe as with the Dulera: tiredness and leg aches being the main symptoms. We're going to try a short bike ride along a flat Portland bike trail today to see how I get on.

A (probably silly) question: will the corticosteroids help in preventing attacks even when exposed to my asthma triggers? Or do the steroids just reduce the severity of attacks?

[clarion]

Not a silly question at all.  In fact, I think that's a big one for the pharmaceutical companies.  The current thinking seems to be that it's a bit of both.  That would mean that low-level exposure might not trigger an attack if you're on steroid inhalers, and, if an attack is provoked, it won't be as severe.  Very hard to measure, but there have been huge long-term diary studies.

Side effects do very from drug to drug.  Yours are among the rarer ones, but still significant.  Give it a bit of time to settle, but, if you're not getting on with your current inhaler (Advair is very popular right now, as it happens), there are loads of other ones out there.  Mine is Flixotide (also fluticasone propionate, but not in combination), as I mentioned, which is long-established.  Everyone's different.

Glad to hear you are improving, though (and not wasting your time on useless 'therapies').  Hope the test ride goes well.

[twiddler]

Clarion is certainly knowledgable about the available pharmaceuticals, but i would differ from his blanket rejection of 'therapies' as a friend of mine was able to come off medication through practicing the Buteyko method.  I think one does better to keep an open mind and follow the available evidence.

[Illegal Combat Ant]

But don't keep your mind so open that your brains fall out. Ask to see the peer-reviewed literature on any 'alternatives' you are offered. Asthma is too dangerous to fuck about with acupuncturists and naturopaths. Conventionally medically trained practitioners using evidence-based treatments are your friends here.

[Rev Will]

Evidence on the Buteyko method is weird. I admit I had never heard of it before when I worked on a respiratory ward last year as a student nurse. A quick search of the Cochrane Library gives 3 papers, pretty small scale trials. It appears it doesn't improve lung function but does reduce inhaler use.

If I had to draw a conclusion, I'd suggest it helps with the panicked spiral when you can't catch your breath and anxiety is the driver. I'm a real cynic of these things, so I'd suggest further research is needed.

[jane]

I use a corticosteroid daily and have done so for many years.  Before these were available, I really struggled to keep my asthma under control.  Severe attacks were frequent and I was hospitalised many times as a child and in my teens, as well as needing emergency adrenalin injections on many other occasions.   I was tested years ago for triggers and mine were numerous, including lots of pollens.  Although the corticosteroids keep my asthma under control, if I am exposed to a trigger, I still develop symptoms, but they won't start so dramatically.  For instance, if I go into a house with a cat, I will get itchy eyes, start to sneeze and get wheezy, whereas before the wheeziness would have been immediate, serious and problematic straightaway.  In short, I am not symptomless in the presence of triggers, but the symptoms are not so immediately life threatening as they were before.
   Interestingly, every year, as you may know, I tend to do an extended tour, in a sparsely populated area.  I experience few symptoms at all,  unless exposed to a direct trigger.  Whereas, at home in London, I still frequently experience what I call low level wheeziness (two or three times a day) and will use my reliever at least once a day.  Here in Scotland, I have used it maybe 4 times in three weeks.

[jane]

I also meant to add that, for a period, several years I strongly resisted the advice of my doctors and asthma nurse that I should use the preventer regularly.  I hated the idea of using steroid medication daily, partly because of my fear of the side effects, partly because I felt it gave me the identity of a sick person. I hated that idea.  I tried lots of alternatives, but nothing worked for me, and in the end, after yet another hospitalisation, the anxiety I was causing those who loved me (my father, especially, because my mother died aged 30 of emphysema and asthma) and the realisation that nothing else seemed to work for me, I started taking them regularly again.  I have been using them regularly for over 15 years now.  I am not totally asthma free, but I have only had, I think, one serious asthma attack since then, due to direct exposure to a trigger.  Previously, I had several every year.

[peliroja]

Thank you all for sharing your experiences. Your contributions have been extremely useful in helping me understand my own condition.

Funnily enough, while living in the centre of London I had little to no trouble with my asthma at all and barely had to use my ventolin. I was only really affected when I had a chest infection. Since leaving The Smoke, it seems many things trigger my wheezing. As the United Statians say, go figure.

[Dare I tempt fate and say that I am feeling slightly better today? I still feel very tired and achey-leggy but yesterday managed to walk the dogs and cycle seven miles with three puffs of my ventolin. Today I walked the dogs and cycled six miles, including some slight hills, with just one puff.]

A question for folk who use the powder 'disc-halers' rather than inhalers: how does one prevent the powder sticking to the inside of the mouth when inhaling? I'm sure my technique is faulty...

[Kim]

It's been a while since I've used a powder inhaler, but the research shows that drinking water *before* taking steroid inhalers reduces the rate of oral thrush (presumably by making the back of the throat less sticky), so it's probably a good thing to try.

[Pippa]

Peli, as an aside to all of this I was interested in the results of your allergy tests....

I am not an asthmatic and have no experience of any asthma treatments, or indeed allergy treatments, this is simply stuff I have become aware of through general research.

Anyway, there is a theory that a lot of asthma is actually allergic asthma, caused by an allergic response to something (the allergic march). There are studies on going that are looking at treating an allergy during childhood and seeing if that can prevent asthma in later life (the PAT study).

I don't know if this will help you at all, but if you are allergic to grasses, perhaps getting treatment for the allergy will help with your asthma. In Europe tablet immunotherapy is approved, both GRAZAX and Oralair (these are from different companies and are not available everywhere in Europe, also in the UK you will need to see a specialist). In the US they are not even filed with the FDA so are not available yet. The data published suggest that around 30% of people are "cured"of their allergy. However, most of these were hay fever and not asthma patients. I have independently spoken to allergists in the US and EU who are very impressed with the data.

As I say, this is unlikely to help you now, but I did think your allergy test were interesting and if this is the underlying cause of your asthma, then perhaps it is possible it can be treated. Also, as I understand it, this year happens to be a "perfect storm" in the US for hay fever i.e. there is a boat load of pollen about in the air, which could be making your asthma worse than you are used to.

Apologies that none of this will help you in the near-term.

[peliroja]

That's very interesting, thanks Pippa. It rings a bell - I recall that a former colleague of mine took a course of something to help her severe pollen allergy, and it worked brilliantly for her. It's definitely something I'll look into in depth once we're back. It may be sooner, rather than later, at this rate! 

[Kim]

I don't know if this will help you at all, but if you are allergic to grasses, perhaps getting treatment for the allergy will help with your asthma. In Europe tablet immunotherapy is approved, both GRAZAX and Oralair (these are from different companies and are not available everywhere in Europe, also in the UK you will need to see a specialist). In the US they are not even filed with the FDA so are not available yet. The data published suggest that around 30% of people are "cured"of their allergy. However, most of these were hay fever and not asthma patients. I have independently spoken to allergists in the US and EU who are very impressed with the data.

Interesting...

My asthma is mostly allergic (it can be triggered by cold, but is far more easily controlled in winter than in summer, unlike most asthmatics I know).  Keeping my hayfever under control and avoiding known allergens (pollens, dust, dogs, spores) is the most effective way to control my asthma.

When I saw an allergy clinic and had sensitivity testing a few years ago, they decided that they didn't want to attempt desensitisation because my asthma was too badly controlled.  But it's a fair bit better these days (not living in shared houses, tactical use of air conditioning and better antihistamines and nasal steroids have made a big difference).

Of course, grass pollen is only about a third of the story for me, but it could make July a lot less miserable...

[peliroja]

It's been a while since I've used a powder inhaler, but the research shows that drinking water *before* taking steroid inhalers reduces the rate of oral thrush (presumably by making the back of the throat less sticky), so it's probably a good thing to try.

I will definitely try this, thanks Kim. I seem to be developing a bit of a sore throat  and I'm sure that's due to the powder inhaler. Unfortunately, they're the cheapest version available in the US it seems ($100 rather than $250).

[Kim]

Drinking some water afterwards won't hurt, either - but wasn't as effective as doing it beforehand.  I can't remember whether they concluded that gargling alcohol-based mouthwash was actively harmful, but it certainly gave no benefit over plain water.

[Feline]

Sorry to hear you're still being plagued by asthma peli.
I have adult onset asthma (started when I was about 35) and also other allergies which are most probably linked. I am much worse in the winter, so much so I can usually come off all my inhalers for a few months in the summer. I am permanently on anti-histamines for the allergies.

The steroid inhaler is your friend, it damps down inflammatory responses right down in your airways that lead to the spasms so actually prevent the asthma, unlike salbutamol that just relieves the symptoms when they are already there. The nurse at my GP clinic gives me a verbal slapping if I have had more prescriptions for reliever inhalers than preventers when I go in for my reviews, because if managed well you shouldn't really be needing the reliever much at all.

In the winter I mostly have to use the reliever at night when I can't get to sleep because my peak flow is too low and I feel too 'suffocated'. Sometimes I don't realise how much I am struggling for breath until I try to get to sleep 

I was quite resistant to using the steroid inhaler in the early years, and when my peak flow improved I would reduce how often I used it, leading to quick relapses and chest infection after chest infection all winter. My GP has since persuaded me when having symptoms to use the steroid one twice a day every day without fail for at least a month before even thinking about reducing the frequency to see what happens. The hard bit is convincing yourself to do it anyway when you actually feel well. I had to mess about trying different types of steroid at different doses to get one that suits me.

I was on a green Serotide inhaler as well at one stage (long acting bronchodilator), and I've also had many short courses of oral steroids to get things back under control again when they have gone pear shaped. A few years ago I got the flu and the chest infection that followed went on for 5 months and I ended up with emphysema and some consolidated lung. After that experience I think it's probably very wise to have the flu jab when you are asthmatic.

Personally I haven't tried any 'alternative' therapies. I keep meaning to try inhaling steam when I'm next bad to see if it helps, some people seem to swear by it (face over bowl of hot water with towel over your head kind of thing).

One handy thing I have is a spacer chamber for my steroid inhaler. It prevents me from going into a sudden coughing spasm when I initially try to breath in (this only happens with the steroid one not the salbutamol). It's just a plastic tube with a valve in it you squirt the inhaler into then breath through but has really helped me. I have no idea if this is true, but I think I'm less likely to get a large concentration of the steroid vapour at the back of my throat when I use the spacer because I'm not squirting the thing straight at it.

[peliroja]

Kim - the drinking water before inhaling and rinsing afterwards seems to be working. My sore throat has gone!
Feline - thanks for the tips. I do have a spacer which works really well with my blue inhaler, but isn't any use with the powder one.

Speaking of peak flow, mine is generally pretty low. 370 is the best I've ever done; during an attack it's usually about 320-340. What significance does this have and should I be aiming to increase my numbers? I've never really had this properly explained to me.

I'm off to the specialist again today and have a long list of questions which occurred to me once we'd left last week.

[Feline]

Kim - the drinking water before inhaling and rinsing afterwards seems to be working. My sore throat has gone!
Feline - thanks for the tips. I do have a spacer which works really well with my blue inhaler, but isn't any use with the powder one.

Speaking of peak flow, mine is generally pretty low. 370 is the best I've ever done; during an attack it's usually about 320-340. What significance does this have and should I be aiming to increase my numbers? I've never really had this properly explained to me.

I'm off to the specialist again today and have a long list of questions which occurred to me once we'd left last week.

My understanding is that your optimal best peak flow is height dependant. I think mine should be a about 450 (but I'm 5'8"). The lower it is compared to your normal healthy flow the more constricted your airways are. I think the treatment is supposed to be aimed at getting your peak flow right up to your best levels if possible. At my worst I can't even blow into the thing without collapsing in a coughing fit, and I often can't blow 300 in the winter. I find anything lower than 300 for me and I can't walk up the stairs without becoming out of breath. I tend to use salbutamol prophylactically when I'm riding the bike when things are bad, rather than wait until I actually have an asthma attack. The same goes with doing aerobic exercise in the gym, I tended to get funny looks for using my blue inhaler then getting on the treadmill, but it works better that way for me. If I'm going out into really cold air a puff on the blue helps too.

[hellymedic]

Peak flow is height and sex related, so Ms Average will have a peak flow around 430 and taller gals will usually have more.
Mr Average's peak flow will be about 100-150 more than Ms's.
Peak flow measurement is not helpful for all asthmatics. IIRC, Clarion is one of those.

[Kim]

Thanks to my hobbit-like proportions and excellent peak flow meter technique, I have a very high peak flow for my height.  It's also of limited use as an indicator of the condition of my asthma, as unless I'm actually in the middle of a serious attack the variation is mostly random (I plotted detailed graphs a few years back, and it was mostly noise).  If I *am* in the middle of an attack, I have to persuade the medics that low 400s is Bad News, and not the perfectly healthy reading their lookup table predicts.