FeNo Tests & living with asthma.

[EducationAvion]

Hi All,

First port here!

I have had a bad year with my asthma, I have never really had problems before. I got a chest infection at the beginning of the year, that keeps coming back and it has completely changed my life in terms of my asthma. All my medication has changed and I have been told that if my Drs can't get it under-control soon then they will be referring me to see the Asthma care unit at the hospital as its now bordering on being uncontrollable asthma.

I currently take 8-10 puffs of Fostair a day, depending if I need the extra 2 puffs. I take Ventolin as required up to 10 puffs, I am taking it around 3 times a day at the moment. I take fexofenadine twice daily because hay-fever is a huge trigger for me and I started montelukast around 2 months ago. Since starting the montelukast I have unfortunately had covid and am struggling to get back to normal, I have had a lot of steroid's over the last month to give me a boost, which has been helping but as I need a FeNO test the drs are taking me off them to prepare for it.

Just looking for any tips people use to get control of their asthma again after and during a flare up and to see if other have had to have FeNO tests for asthma. I have watched some videos on what they are and have done a but of research into them but just wanted to see if there are any tips or tricks to get the hang of doing them?

Thank you!!

[Lysistrata Administrator Community Ambassador]

Hi and welcome! Sorry to hear you've been struggling with your asthma. My main tip for FENO testing is to ask for the screen with the dial, not the cloud as for some reason most people seem to really struggle to do the version with the cloud! I'm very good with the dial and usually get it first time but can't handle the others, and have heard others say similar. If they say it makes no difference then ask to do it anyway - it makes no difference *to them* to change it. (Obviously if you struggle with the dial you can always ask to change back!) I do find FENO easier than spirometry but it can be hard work if my lungs are struggling.

When you say you're being taken off steroids to prepare for a FeNO test, do you mean you are being taken off oral steroids, or off your Fostair (inhaled steroids) as well? If you need oral steroids, you need them so I hope they aren't withheld purely for the sake of the test if they would otherwise be given. I *really* hope you're not being taken off Fostair for them as that's not how it's supposed to be done as far as I'm aware - it's either part of diagnosis (and I do stress *part*, not the whole picture), or it can be used to see if you need *more* steroids/have a particular type of inflammation despite being on inhaled steroids, or in some cases, though not always recommended, to see if you are taking your inhaled steroids. It's often used in specialist clinics to see what type of inflammation someone has and if they're eligible for certain treatments.

The British Thoracic Society guidelines, which most UK medics seem to use, say:

The guidance for monitoring asthma, based on all the latest evidence, does not recommend:

• Routine use of FeNO testing in adults or children except in specialist asthma clinics. The test involves measuring an individual’s fractional exhaled nitric oxide - a gas found in slightly higher levels in people with asthma. An increase may suggest some inflammation of the airways and supports, but doesn’t prove, a diagnosis of asthma. The available evidence was inconsistent on how effective the test was in delivering different positive outcomes indicating better asthma control

Since you mention a potential referral, you presumably aren't yet in a specialist clinic - have they said specifically why they're doing this test, and what the plan is when you have the results? The evidence is quite mixed on how useful FeNO actually is, as this paragraph says - this link is from the maker of the machines but it looks like a good summary of how different places use it, if you wanted to get an idea of the differences - feel free to ignore if it's confusing or not helpful:

niox.com/en-gb/guidelines-r...

In terms of your asthma in general, you may find it useful to talk to the asthma nurses on the helpline - 0300 222 5800 M-F 9-5 or on WhatsApp - 07378 606728. They are lovely and have much more time (and often more knowledge) than a GP or asthma nurse.

[Hil101 in reply to Lysistrata]

That's interesting. How reliable is feno as an indicatorof problems on its own? I have very high feno despite max dose Fostair AND ciclesonide inhalers. Feno was 300, has been down to 140 but now up to 200 despite my symptoms being much improved (and not needing ventolin) since doing Buteyko. But the Brompton are using the high feno reading (and 3 pred courses early in the year) as a reason to put me on biologic treatment. This is currently being approved. Since I also have 3 gut autoimmune conditions, I wonder if the feno is measuring other inflammation somehow. I am not inclined to go on biologics when they say you still have to take steroids as I don't see the point in adding to the risk. But the High feno reading seems unexplained in the face of reduced symptoms which mainly consist of an irritating cough

[EducationAvion in reply to Lysistrata]

Hi Lysistrata,

Thank you for responding! Thats has put me at ease!

The drs have taken me off the oral steroids in preparation for the FeNo test. They have said if I have another flare up that my Fostair dose not help with I can call up for more but the test will then be delayed as it can effect the results. I have been told to not do very much and avoid all my triggers, not very easy when my main trigger is hey fever.

I am still currently with my GP as they have said the wait list to see the specialist at the hospital is very long and they would rather try and get it under control with them rather then waiting for them.

The plan with the FeNO results is to see if I am on the right steroid preventer inhaler and to potentially up it to an even stronger one if they think I need it!

Thank you for all that information!