i'm writing in hope to find some answer or someone on my same boat as me!
4 years ago i got what a think to be a bad case of bronchitis, far from home so decided to have a trip to the ER... chest was wheezie, lot of phlegm, that kinda stuff... the doc on shift put me on a rounds of nebulizers that night and, the next morning, i was on my way with my prescriptions for antibiotics and a seretide inhaler... when i come back home my GP was kinda shocked, so he orders me to stop the inhaler for a couple of weeks and order a spirometry and a methacholine challenge.. everything turn out negative so i was hoping to going back to my normal life but no... that was just the beginning...
he was not sure about the asthma stuff so he redirect me to a pulmo that, obviously, order a spirometry (turns out perfect), another methacholine challenge (negative again), allergy tests (also negative) and, drum roll, a bronchoscopy... eveything was fine again but no, the pulmo decides to put me on seretide... then it starts my real calvary, within' the med (seretide inhaler 25/125) colds start to turn in to bronchitis more often, got pneumonia once and i'm getting flu at least two time a year... i recently moved to another town so i got a new GP...
he seems pretty sceptic about that asthma diagnosis, he ordered a HRCT to rules out bronchiectasis and want to repeat all the tests... so now i've to stop the seretide and i'm a lil scared about doing that, i have the fear that something should flares up even if i'm pretty sure that i'm misdiagnosed...
my simptoms are quite strange too... if i caught a bronchitis i wheeze, mildly.. but its always localized in a certain point of my lung, never widespreaded and, it always clear with a small coughing effort... another funny fact is that i never get out of breath! never had the necessity to use the rescue inhaler... now they say that i should be seretide-free for almost two weeks prior the PFTs but I wasn't instructed about the tapering (someone as any experience?)... i'm start losing my mind around that, please help me...
thanks a lot
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MARK182
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You seem to have been on a very strange medical journey; almost like your GPs wanted to consider everything EXCEPT asthma. Now they might have good reasons for that, perhaps emphasised by a second GP taking a similar approach, but it does all seem a bit back-to-front.
Anyhow, regardless if you're having a scan, that will address bronchiectasis or variants of it, and I guess the 'perfect' spirometry has to tell you something (did they do it standalone, or did they get you to take Ventolin midway through?
As I said, this all sounds quite complex & as we're not medically qualified by & large on here, you might need to try & get a sensible conversation about their decision-making from someone who is. You could see if there are any health advocates near you, who could try & get greater clarity.
the ct scan was normal, and no ventolin was used during or after the spirometries... they say that the values was pretty perfect so there was no need for the bronchodilator test... my concern now is to takin steroids and laba for a disease that probably i dont have, wasting NHS resources... you say they consider everything except asthma (and the tests seems to rule out it too) but they still take me on seretide... by the way, is the methacholine challenge a sort of gold standard for ruling out the condition right? so, i will take the third round...
I'm surprised no Ventolin was used during the spirometry tests, as the test for asthma is that it is reversible (ie, you test before and after Ventolin and see if you get an improvement). If you've got a peak flow meter, you could do that yourself if you've got some Ventolin (I'm not sure Seretide will work quickly enough). My guess is that you have have an average peak flow for your age, so no one is particularly worried about it. However, readers of this forum will know that peak flow is not a good guide: for instance, I have a very low peak flow with very minor asthma symptoms, whereas some with good peak flows often get significant symptoms - it's all very individual and unpredictable. My asthma diagnosis (plus fixed small airways obstruction) was diagnosed after years of incessant winter colds, so there may be a link with your respiratory infections. I think you need to pursue this - you might not like the idea of corticosteroid inhalers, but I'm told they DO work (if you get the right one) and can even mitigate non-asthmatic lung conditions.
no Ventolin was used because everything was over the higher limit (FEV1 115% PEF 132% FEV/FVC 108%) and got no drop during the methacholine... the first PFTs was done before starting the seretide so they cant be false negative, other tests I've done while using the inhaler was pretty much the same... i never rely on PEF because i'm aware of its limitations... my point is that i'm not worried about having a condition and being mistreated but, instead, to be treated for nothing... i'm an agonist athlete so now i always have to fulfill modules for using meds that is considered doping and, after starting the inhaler, i'm getting chest-sick more often than before...
That's my point - there is no limit. You have excellent lung function, probably because you're an athlete, but that doesn't mean you have no asthma. However, I've reread your initial post and I'm beginning to think that the original Seretide was prescribed as a precaution, and I've had problems with aerosol inhalers making the mucous worse. I still think, though, in order to bottom this out, you need to check your peak flow before and after Ventolin as the only way to properly verify any asthma. If THAT is also all clear, then you will probably be advised to stop the inhaler, especially if think it's making you ill.
sorry for beign redundant but do i need a post BD test after a two times negative methacholine? wasn't the provocative challenge more useful and accurate?
From what I understand, negative methacholine challenge is generally a good indicator of there being no asthma, though, as others have mentioned, your tests seemed to have been rather less than systematic. If you and/or your GP feel that the tests have been sufficient to rule out asthma, then treatment for it would seem to be redundant, unless there is some positive indication of another lung problem (some asthma medication works for other lung conditions), but that doesn't seem evident from your post. Frankly, I am very jealous of your exceptional lung function!
HRCT and bronchoscpy came out clean too... seems like they dont wanna take the medical responsability to revert a possibly wrong life-long diagnosis and so they do tests...
I, too, have a rather jaundiced view of medical tests, though they do tend to rule out anything serious without necessarily proving what's wrong. I have had intermittent prostate pain for 22 years following a bad infection and all the tests in the world (and two surgeries) have not shown anything serious but not solved the problem either! I just treat it myself the best I can and my local GPs are happy for me to do that, since they have no better ideas. If you find treatment (or lack of it) works for you, I'd just stick to it. I think doctors rely too much on tests and less on what works for the patient - which, in the end, is really what matters!
I was going to ask if you stopped the Seretide for long enough before the challenge tests, because I got a negative and subsequent positive due to the fact that they often seem really bad at giving instructions for what to.do before these tests! I did my own research before the second one and what they told me to do in terms of.stopping would have really confused the results. It isn't a gold standard test if it's not done properly!
However I see you were off Seretide at the time for both tests. They aren't perfect but that does point away from asthma, even if I agree that it is a sloppy habit not to do reversibility even if the initial tests are good - you could be capable of even more!
The British Lung Foundation has a helpline with respiratory nurses who I have been told are very helpful. Maybe you could try talking things through with them and see if they have any ideas? Asthma UK nurses are also really good of course but if you aren't really sure if it is asthma maybe the BLF would be first port of call.
yep i was seretide-free before my two bronchial challenges, they put me on it after that... i will try to talk to my GP for the reversibility test... for how many time did you stop the inhaler before the meth? nurse say that two weeks should be enough but she know nothing about tapering and the pulmo seems pretty confused about it too... i'm on this baby for 4 years, i dont wanna risk to stop too roughly...
2 weeks is more than enough - I was being told 24 to 48 hours for different inhalers (Fostair Nexthaler one time, Symbicort another) plus I was on other tablets which have variable effects on the mechanism of the test and wasn't being told long enough - at least you don't have that to contend with! Was pretty hard work stopping I have to say.
In case it helps, I should say that the first time my asthma was better than it is now, but another patient in the same hospital also had a negative challenge test at the same time as me and she had confirmed severe asthma with a previous positive challenge test! She felt they had given her the wrong instructions on stopping medication, but I don't think it would need to be as long as 2 weeks. In case it helps, they did do reversibility after my challenge test and even though the test itself was negative, I showed strong reversibility with bronchodilator. (My lungs really like to confuse everyone lol).
I think I googled and looked at the instructions from various hospitals but can't remember what they said for inhalers specifically sorry. The absolute longest was a montelukast tablet for 4 days; inhalers less than that. I would do same for reversibility if you do end up having another test ie look up recommended timings to withhold your inhalers, and politely ask for them to do the reversibility even if you have good initial results. I find sometimes the people actually carrying out the test can get very textbook focused and insistent on following all the instructions to the letter without thinking about the reason for testing, and I have had to insist a couple of times that they should still go ahead and try reversibility whatever the initial results. I am generally always reversible but right at the start I didn't know enough to insist on them doing that.
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