High FeNO levels

[Smegs1978]

Hi,

At my last asthma checkup my FeNO level was 55, where as previously it had been 35.

I take symbicort 400/12 2 puffs twice daily and Spiriva 2 puffs once daily, so wondering why my levels would have increased? My asthma nurse said it could be because I was having an asthma flare up and my airways were inflamed.

Is there any other reason that the level could be raised?

[EmmaF91 Community Ambassador]

Hi

FENO is something that they currently don’t have 100% understanding of. They know that it measures nitric oxide, which in some asthmatics is can measure the inflammatory response. FENo isn’t actually an indicator of severity or even if attack. One of my hosp ANs likes to tell me about how the highest score they had seen (around the 200 mark I think) was in what they called as a moderate asthmatic, and they had no symptoms... they did then admit to not taking their maintenance inhalers tho. The next time they saw them the score was much lower, even tho their ACT and presentation had not changed at all. For me, my FENO usually increases after I’ve started hosp treatment if I’m having an attack then will lower once I’m completely controlled (I think my range now is 18 - 136 give or take a couple)

If you have hayfever or the like, that may explain the increase if you haven’t had any change in asthma symptoms. FENO is affected by the cells which inflame in allergic responses.

I hope this helps explain it a bit

Stay safe

[Pipsqueak77]

Hi Smegs1978

I ( and my cons) find FeNO levels really useful for attempting 😬to control my asthma inflammation.

Basically if your levels are above 50ppb then you need more steroid.

This is generally true for everyone - severe asthmatic or not but a bit of caution there as there will always be exceptions to that rule!

I personally find it really useful but there is not enough evidence yet as the equipment is not widely available in primary care.

Stay safe..😊👍

[Lysistrata Administrator Community Ambassador in reply to Pipsqueak77]

That's how my specialist team uses it too - spoiler alert, I pretty much never do need more steroid, because I have an annoying kind of asthma. Plenty of asthma but most of it not apparently caused by that kind of inflammation. My highest FENO was 55 and that's definitely nowhere near the worst I have been as I was walking around and going to work Vs in hospital!

I would want to see way way more training on its use before it goes into primary care, to make sure it gets used as your and my teams do and not just for diagnosis without understanding the limitations. I know NICE loves the idea because they think they can undiagnose lots of people (they are totally obsessed with overdiagnosis and forget about underdiagnosis and undertreatment which is highly dangerous and a problem for asthma in the UK). However, I suspect it would just mean people like me get told we don't have asthma. There is still a lot of belief that you have to have allergic or eosinophilic inflammation and respond to steroids to have asthma.

Sorry, rant over! Hope this was useful Smegs1978!

[Smegs1978]

Thanks all for your replies.

I was told on my last hospital admission as my eosinophilic level was so low I didn’t need any steroids, however when I saw my asthma nurse 2 weeks later it had risen and my FeNO was raised so I clearly did need them.

I feel like getting a T-shirt printed to say I don’t follow the normal rules of asthma - no wheeze unless my peak flow is really low (<50%) I respond very well to nebulisers despite no wheeze and I also respond well to oral steroids.

I feel like im fighting constantly to get any proper treatment and the only person who seems to understand is my asthma nurse.

[Lysistrata Administrator Community Ambassador in reply to Smegs1978]

Ugh I do feel for you being weird -I am also odd with asthma in many ways including no wheeze, and it causes issues! I sometimes get people trying to tell me nebs won't help because they treat wheeze. No, they treat bronchospasm of which wheeze can be a sign but isn't essential - they're not the same thing, and oddly enough I do respond to them usually! Please learn the difference if you work in healthcare gahh. It's like saying treatment for a heart attack is 'treating chest pain'.

Is your GP any help? Do you have a consultant (guessing you might if doing FENO)? I know from bitter experience that they are not all made equal - is there a chance to see any others in the same clinic if the one you usually get isn't helpful?

[Smegs1978 in reply to Lysistrata]

My GP is just as bad, they make me feel like I’m making it up. I know when I need steroids, but they won’t prescribe until my peak flow has dropped to <70%, of I’m wheezing, however the last time I shoved my asthma plan in the GPS face and she reluctantly gave them to me.

I’m under the difficult asthma team at my local hospital and they are in discussion as to the best treatment for me as the inhalers I’m on don’t seem to stopping the frequent attacks.

I was admitted one time and the consultant that saw me told me I didn’t need a nebuliser as I wasn’t wheezing, I know after a nebuliser I feel so much better! I lasted a week at home before I was re admitted with another asthma attack.

[Lysistrata Administrator Community Ambassador in reply to Smegs1978]

Ugh if I had a pound for every time I heard that about nebs I could probably give up work. Scary that they have such a lack of basic knowledge - most of the people I have heard that line from have been respiratory specialists!

When all this is over and you can see your GP again would it be worth trying out a different one at the practice? There are some who are ok at mine and some I would have to be dying before I'd go near based on previous experience!

Also maybe worth trying to give the AUK helpline a call at some point - though again I know they're a bit swamped right now.