Stopping Brown Inhaler

[Noddy66]

I was diagnosed with exercise induced asthma aged 40 around 30 years ago. I played rugby till I was 60. I do tend to get chest infections in winter but respond quickly to antibiotics and have had pneumonia twice many years ago. I go to the gym three times a week to keep the phlegm shifting. I have always queried my asthma diagnosis so after discussion with my GP I am stopping my ICS (Clenil Modulite) I did enquire with him about FENO testing but it's not available yet. I am a week in and no problems peak flow remains around 500 and actually less phlegmy than last week. I wonder if anyone else manages without ICS and also whether anyone has actually had a FENO test?

[gamba]

I did a feno test at the hospital - what is it that you want to know?

[Noddy66 in reply to gamba]

Regarding Feno test I just wondered whether they are readily available. They are being pushed in the NICE asthma guidance but don't seem available in GP surgeries, certainly not in mine as I mentioned. FENO testing was first mentioned on this forum years ago. I haven't seen a respiratory Consultant for over 25 years so have lost touch with hospital practice. Not that that is a bad thing. I have arranged to see a physiotherapist for a respiratory assessment because as I know I'm better when I exercise so looking for tips to improve breathing.

[Lysistrata Administrator Community Ambassador]

The machines are pretty expensive so I doubt any GP surgery would have one. I have it done at my specialist asthma centre and they only have one machine between all of them though it is used regularly. They use it to assess steroid treatment needs in my case.

I really think NICE are being ridiculous with their FENO guidance if I'm honest. They ought to consider that the machines are expensive and also that interpreting the test needs proper training and context which may not be available in primary care. The evidence for FENO is complex but it should not just be used to rule asthma in or out - it doesn't allow for all sorts of factors including asthma type. I have severe asthma but in primary care might be told I don't have it at all if they just used FENO. Based on what people have said on here I think even spirometry interpretation needs better training.

I can see why you want to query your diagnosis, and perhaps you could discuss further with AUK nurses, but not sure FENO is going to have the answers even if your surgery did have a machine. My opinion only but NICE seems to think it is some magic tool to undiagnose more people with asthma and it doesn't work like that, besides being bad for those who would be affected by its crude use without context. Perhaps they could try recommending an approach that looks at the overall picture and being aware asthma is not one disease and varies within people over time?

Apologies for the rant - not aimed at you! - and hope you keep well off the inhalers.

[Noddy66 in reply to Lysistrata]

No thanks that is useful. Having read posts on here the variation and complexity of asthma presentation is illuminating. I can agree with NICE about the need for correct diagnosis but the jury seems to be out regarding FENO. I'll do a bit more reading. Day 8 without brown Inhaler and no symptoms still blowing 500.

[Lysistrata Administrator Community Ambassador in reply to Noddy66]

I agree that accurate diagnosis is important but every time you hear about a new tool for diagnosis, it seems to be focused on undiagnosing and saving money that way - admittedly, this may sometimes be a media bias rather than NICE. I agree it is important to make sure people are not taking asthma medications unnecessarily, but they never seem to remember it is under as well as over diagnosed due to lack of understanding, and missing a diagnosis costs in human and financial terms.

Glad things are still going well for you though advise caution in general given asthma variability - I was sure my asthma had gone away while I was at university as it seemed so mild, but it hadn't and swine flu turned it into something altogether different. If you are prone to infections I would at least be cautious and make sure to get flu jabs etc though I'm sure you are aware of this.

[Hidden]

I did a couple of clinical trials at the Brompton and have done a dozen or so, I never asked for the results but its quite a tedious test.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

The results flash up on the screen when I do it! I then did some reading into how it's used. My clinic loves FENO so I get it every time I go - hard work I find especially when I'm struggling, but I prefer it to spirometry.

[gamba]

I had the feno test as part of a suite of tests for my consultant. I don’t think it told them anything they didn’t already know!

[Noddy66]

Well 8 days off the brown inhaler so obviously no steroids in my system. Gym as usual Friday and as usual shifted plenty of phlegm. Yesterday my chest started getting tight and peak flow dropped to 350. Now I've been on inhalers for nigh on thirty years and not had this scary feeling before. So I'm thinking maybe I do have asthma and the inhalers have stopped the symptoms previously. Or maybe my body for the first time has to fight the effects unaided and will overcome! Yeah maybe but I did take two puffs of Ventolin just in case. Slept well and a bit tight in chest today but blowing 450. I have to decide whether to carry on taking my brown inhaler or stick it out a bit longer to see if I come round. Obviously I don't think this heat helps and I had a few drinks yesterday, alcohol that is. I stick to a 4 drink rule these days. I also tried something else new today as I do have heavy nasal congestion. It's what they call a Neti Pot you fill it with warm water and a salt/bicarb of soda mix and squeeze it into one nostril. It's a weird feeling as it comes out of the other nostril. Really cleared me out well. I'm gonna try a bit longer without my Clenil Modulite so watch this space!

[Noddy66]

Well tight chest and wheezing continued so I started back on my Clenil Modulite with plenty of ventolin as my peak flow didn't get above 350 (best is 550). Continued to deteriorate very tight chest and green phlegm so GP put me on oral steroids as well as antibiotics. So won't be messing with my medication any time soon!