I'm 47 have had asthma since I was a teen, for the last 25 years I've been on inhaled pulmicort and salbutamol. This has worked really well, I've never had a serious exacerbation requiring oral steroids or hospitalisation.
I don't get any real side effects using ventolin but just a couple of puffs of brycanl gives me the shakes. I did get put on Symbicort but experienced strong side effects such as heart palpitations, very shaky muscles and disturbed sleep. I saw a doctor who immediately put me back onto my orginal treatment. I've done my best to avoid the asthma nurse since but at nearly every contact she tells me I'm using too much SABA so I need to go onto LABA.
Asthma nurse has told me I can only use 3 canisters of Salbutamol per year or I'll need to go onto LABA full time. Is this right? She's a bit vague about how many I used last year but it seems to be about 7 or 8 so less than one per month. I can't find a clear SABA usage cirteria to progress to stage 3 in the British Thorasic Soc guidelines. brit-thoracic.org.uk/clinic...
Closest I can find is on the manufactures website asthma.symbicort.com/asthma... .Where towards the bottom of the page they quote a survey rather than a fully evidenced trial. So I wonder if the asthma nurse has been unduly influenced by the manufacturers marketing. I guess Symbicort is still under patent so not subject to competion from generic drugs.
In the British Thoracic Soc Guidelines, they say in section 4.1.1 (stage1) that SABA as required is effective as 2 puffs 4 times a day ( which I calculate at 1.2 canister per month) Then they say that using more than 10-12 puffs per day or more than 2 canisters per month is a sign of poor control.
I've been monitoring my peak flow and limiting my SABA use. Without SABA my peak flow generally follows a day/night pattern around 80% when I wake up, rising to 90% by mid afternoon then falling back to 80% at night. This is OK for a normal home/office job existence, but to enjoy exercise (I run 10-15 miles a week) I definitely need some sort bronchodilator inhaler. Am I allowed a separate allowance for EIB?
My preference would be to stay on Ventolin as required. If I'm using less than 1 canister per month I think this is reasonable. Is there something I've misunderstood? How should I deal with the Asthma nurse?
Have u phone the asthma nurse on auk. Sure they will b able to advice further
Calling Asthma UK for advice is a good suggestion.
I'd just like to add, you might find another LABA works for you. Like you, exercise is really important to me and things have been a lot better since I settled into using my LABA (combined with steroid, seretide). I've gone from 2 Ventolin inhalers a month to much less than 1.
I think that your nurse thinks that the amount of SABA you are using shows your asthma is not that well controlled. If you are needing to use your ventolin several times a week then you should step up to the next level.
It might be worth giving symbicourt or another combination inhaler a go. I am not sure how long you tried the symbicourt for, but side effects seem to build up, then start decreasing after a few weeks.
Do you appear to be needing your ventolin a lot because you take a couple of puffs before a run (this could quickly mount up)? If so have you explained this to your asthma nurse?
As the others said it is definitely worth giving the asthma UK adviceline a ring before going back to see your own asthma nurse.
Good luck
Bryony
I use 4 puff before running and sometimes 2 after and run 3 times a week so in theory one inhaler lasts only 12 weeks. At the moment I'm quite well controlled only needing ventolin 2-3 times a week but obviously still whizz through inhalers. She probably doesn't realise you use it as a preventer pre-run. I'd just keep a record of when you use your inhaler and put whether it was coz of symptoms or coz of exercise and take this next time you see her.
Is taking an LABA a problem though? I use Seretide and get on fine, I too struggled with Bricanyl and Pulmicort made things worse.
Jo
Thanks for your replies everyone, especially Jo, it’s good to know that someone else thinks that pre-exercise SABA is not the same as symptom driven SABA use. But it would be good to get an expert to confirm this, perhaps I need to repost a more specific query.
I have tried explaining pre-exercise use to the nurse but I’m not sure she listens. At my last appointment I’d responded to the “how’s things been†question, including mentioning I was running 3 times a week and the next question was “if you were walking down the street with someone, would you be struggle to keep upâ€. Arghhh!!
Really don’t want to try Symbicort again, even if the side effects are supposed to taper off, how would I know if I’d got back to “normal†or was just getting used to the side effects? Looking at the Wiki entries for Salbutamol and Salmeterol molecules look very similar so hopefully I’d tolerate Salmeterol in that same way I tolerate Salbutamol.
The other thing I really don’t get is if my current usage of SABA is too high, the solution is continuous LABA. It makes no sense to me, which is why I feel it is based on drug company marketing rather than evidence. At least my SABA regime is variable and responsive to my needs.
Bit worried about the combined inhaler, if I try LABA I’d prefer to try it out separate inhalers so my access to pulmicort isn’t inhibited by any side effects. Also I think I’d like to start just using it in the mornings as I haven’t suffer from night waking due to asthma since starting pulmicort. I know that combi inhalers are supposed to stop us just using the LABA to mask symptoms and neglecting steroids, but I don’t think I’m that daft.
I think I’ll try putting it in a letter and see if that makes a difference. Mind you the nurse obviously doesn’t bother to read my notes either so perhaps I shouldn’t hope for too much.
I should have said, I usually take pre-exercise Ventolin on top of Seretide twice daily. I think the point is to take as few drugs to have the fewest symptoms as possible. If I don't have a LABA I need a whole lot more Ventolin. I don't think it's a drugs company marketing ploy because I've tested the theory (and the result was a big attack cycling up a hill!)
I think you would benefit from talking to a different nurse. Have you tried phoning the nurse at Asthma UK?
Several things came to mind when i read your post.
Firstly, I agree witb the posts below that the number of ventolin puffs you need for EIA needs to be kept seperate to the number you need 'as required.'
Secondly, if the number of 'as required' puffs exceeds 3 or more a week, this is a sign your asthma is not under control and you need to step up the treatment.
Thirdly, the reason the treatment is stepped up, is because if you use an excessive amount of ventolin without stepping up (excl EIA ventolin) it has been shown in the past that come a serious attack, the ventolin is less effective.
I would like to add too that there is a train of thought that EIA can be a sign of uncontrolled asthma. I wasn't convinced of this (I too get EIA) until my asthma was controlled for nearly 3 years on Symbicort SMART and i stopped needing ventolin before exercise, it was so freeing!! Unfortunately since May my asthma has been really bad but, I now know what to aim for.
Jac
From talking to my GP and the people on here, I think a lot of people can't tolerate formoterol. When I was on symbicort I had muscle cramps, shaking so much I kept dropping everything, disturbed my sleep and even started my migraines up again! I've been switched to seretide now and things seem to be much better, I've not had any cramps or shakes, I'm sleeping better and as yet I've not had a migraine since, but it's early days on the migraine front so I'm just crossing my fingers and toes I've seen the last of them. NICE (National Institute of Clinical Excellence) only approve drugs for use in the NHS based on clinical evidence. They also balance the benefit with the costs so I doubt they'd approve putting people on a drug that costs upwards of £30, if just giving out £3 salbutamol inhalers worked as well.
As for SABA use guidelines, its generally accepted that if you use SABA more than twice a week, excluding preventative doses for EIA, then your asthma is not well controlled. Your nurse may be concerned as EIA can be a sign that asthma is not well controlled, although some people can be well controlled but still experience EIA, its different for everyone.
In the Asthma UK magazine this month there is an interview with Jo Pavey and she said that she needed to take her ventolin before exercise.
If you don't have much faith in the asthma nurse at your surgery have you tried your GP or seen if there is a GP at your surgery who is particularly interested in respiratory diseases/asthma? You could phone one of the Asthma UK nurses and then go in 'armed' with information and a chart of ventolin usage (showing how much is just before exercise). You could then ask for a trial of salmeterol.
The recommendation to use LABA (when asthma is not controlled by inhaled steroids alone) is from the BTS guidelines which are written by a team of medics who have reviewed the results of lots of studies, so I wouldn't have said it is down to the pharmaceutical companies 'pushing' LABA.
Hope you get sorted, better control might improve your running times!
Bryony
Looking at the BTS Guidelines
Thanks again everyone, I've been looking the the BTS guidleines again in more detail. I can't find reference to tolerance building up for SABA but there is the following for LABA.
Section 4.7.2
Long-acting beta2 agonists and leukotriene antagonists provide more prolonged protection than short-acting beta2 agonists, but a degree of tolerance develops with LABA particularly with respect to duration of action.
Also I don't see where they clearly say ""Move to LABA when asthma is not controlled by inhaled steroids alone"".
Section 4.3.1 discusses criteria for add-on therapy but it does not mention use of bronchodilators.
In Section 2.6.1 (Monitoring in Primary Care) bronchodilator reliance is only one of 7 measures
Section 4.1.1 Does define ""Poor control"" in terms of SABA thus ""Poor control is more an 10-12 puffs per day or more than 2 canisters per month"" and Good Control as ""little or no SABA"".
As stage 1 is just SABA and stage 2 is SABA + steroids, I seems obvious to me that must be a zone of ""acceptable"" control between poor and good.
Or am I looking in the wrong places
Who are these mysterious reps?
I visited the Asthma nurse this week.
She tested my peak flow with a meter emblazoned with “Symbicort†on the side. The scale was marked (W-M) at the top, but she was convinced it was the EU scale for no apparent reason.
When she restated the 3 SABA inhalers per year limit, I asked where this came from she said the BTS guidelines. So I asked where in the guidelines this limit was stated, as I had read them carefully but could not find such a limit?
She then said that she acting on what she had been told by the “repsâ€. When I asked “What drug company reps?â€, she said “no educational reps “ but would not clarify who these reps were.
There was apparently a web site where this limit was written down but she did not have time to show it to me and evaded giving me enough information to find it via google.
Not sure how I let that pass but I’m not on top form (really bad conjunctivitis) and perhaps that was when she got all defensive saying I perhaps I should discuss this with a doctor.
Does anybody know which organisation(s) are likely to be setting these limits and “educating†asthma nurses in the Bridgend / Glamorgan area?
I don't know the answers to your questions, but I think you should take it up with your doctor if you feel the nurse is being misleading/misled.
Not sure, but your asthma nurse may be applying a limit implied by the text in the guidelines.
Under pharmacological management (page 33), it states that control of asthma is defined as:
""no daytime symptoms
no night-time awakening due to asthma
no need for rescue medication
no exacerbations
no limitations on activity including exercise
normal lung function (in practical terms FEV1 or PEF > 80% predicted or best) with minimal side effects.""
And later on page 36, *using inhaled beta agonists 3 times a week or more* is one condition that may point to a need to step up to inhaled steroid therapy.
2 puffs, three times a week = 52 x 3 x 2 = 312 puffs = 1.56 canisters of Ventolin/year
Then adding 2 puffs, three times a week for exercise ... that would take SABA use to roughly 3 canisters a year - and perhaps that's where the limit comes from? Everyone is different though, and perhaps you could try calling the AUK nurses on the number in the red box above for advice.
Hope you manage to get things sorted out soon.
Sorry to be pedantic but reading the guidelines a lot more carefully, the sentence in 4.1.1 states:
""Good asthma control is associated with little or no need for short-acting beta 2 agonist. Using two or more canisters a month or > 10-12 puffs a day is a marker of poorly controlled asthma that puts patients at risk of fatal or near-fatal asthma.""
So two or more canisters a month, or more than 10-12 puffs a day is a limit that is regarded as a risk factor for fatal and near-fatal asthma, rather than *just* a sign of poor control.
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