Treatment options for non-eosinophilic / non allergic asthma

[Lotti_321-]

Does anyone know what the treatment options would be for non-eosinophilic / non allergic asthma with no inflammation.

I’m at a loss with it!

[strongmouse]

I suggest that you phone the Asthma UK helpline. The asthma nurses are very experienced and knowledgeable.

Tel: [phone] for independent, confidential advice from friendly asthma specialists

[Hidden]

I have non allergic asthma. I just worked with my doctor's. I hope you find out what you need

[Lysistrata Administrator Community Ambassador]

I feel for you - in the same position and it is difficult given the new treatments are for allergic/eosinophilic and inflammation is assumed to be a key part of asthma - but it is more complex than that. What are you on at the moment? Are you seeing a consultant?

I got told I don't have inflammation driving my smooth airway muscle dysfunction (ie the actual 'twitchy airway') by my consultant in the difficult asthma clinic. I am a little sceptical in my case due to various things eg my Fostair Nexthaler does help so clearly some steroid is needed and occasionally have slightly raised FENO which reflects inflammation. However, I don't seem to respond to oral steroids and often have confirmed attacks with no markers of inflammation. A lot of the stuff on asthma.assumes you *must* have inflammation but it is possible to have the twitchy airways without this being driven by allergic, eosinophilic, or neutrophilic inflammation - not much is known about this or why it happens.

I agree with calling the AUK nurses as they are generally helpful and can talk it all through.

[Lotti_321- in reply to Lysistrata]

I seem to going round in circles with my consultant, he’s trying to diagnose/ treat anything but the asthma. He was convinced I had breathing pattern disorder- I was told yesterday by a physio I don’t. Now he’s back to vcd which came back clear when they tested for.

I am on fostair 200/6 two puff twice a day. Qvar 100- 4 puffs twice a day. Various allergy tablets.

[Lysistrata Administrator Community Ambassador in reply to Lotti_321-]

Oh I so know that one! One negative test and it can't be asthma, but even negative tests and physios don't seem to stop them from persisting with the breathing pattern and VCD things! I got told I have some kind of odd breathing dysfunction on top of asthma which can't be fixed despite all the usual methods so I got discharged from physio. Can happen- asthma can drive it but now they're trying to pin a lot on that - I'm cross as I feel it is a cop out and the cons keeps changing his mind - last appt he talked about bronchial thermoplasty ans gave me home.nebs then nothing useful in letter other than banging on about the breathing thing and my peak flow.

Are you in a general respiratory clinic or a specialist asthma one? The general resp ones are often less useful as they have less experience with asthma, especially the more unusual types, ans the response is often to try and pretend there is no asthma to avoid dealing with it. I have had plenty of that and the current specialist place is a bit better even though they have ups ans downs - they at least don't try to claim it is all in my head ans have got me off the non working pred.

Does the allergy stuff actually help do you think? There are non-steroid based treatments you could try. I am on Fostair Nexthaler 200/6 2 puffs twice a day; Spiriva Respimat - worth asking about for non-allergic; Phyllocontin tablets (again worth asking about though not popular with cons as they are an old drug and some ppl have bad side effects - I don't. Also montelukast which shouldn't work for me as it's often considered to be for allergic, but is also for exercise induced so maybe that is what helps me. All of this doesn't fully control me but does help and I will notice if I.miss.any.

[MrsCMK]

Hi Lotti_321-, I’m in a very similar boat to you. I developed horrendous symptoms last spring which were magnified during the extreme hot weather last summer. I lost count of how many attack’s I was getting each week (I think I was averaging about 15) and still no diagnosis- “it can’t possibly be asthma because you don’t wheeze, it must anxiety and stress”- trust me, the only thing stressing me out is not being listened to.

I hope you find answers soon. For me they’ve come too late and I lost my job and career of 16 years- my employer completely tucked me up in the most calculated of ways which meant that I couldn’t go to a tribunal

Best of luck to you....update us if you can!

x

[Lotti_321-]

MrsCMK Lysistrata thank you!

I feel the same, that it’s a huge cop out at the moment. I received a letter last week that it was all my head and referring me to see someone to talk it all through.

I saw a general respiratory dr and he referred me to an asthma specialist.

The fexondenidine and flixonase nasal spray do help my nose/ eyes streaming. Still sneeze all the time and my ezcema can flare on & off.

I’m montelukast but don’t feel it does anything for me.

When am post flare I’m fine just the gaps are getting smaller between the flares.

They said yesterday that as there’s no inflammation there’s no point in treating with steroids as won’t do anything. But still on high steroid inhaler and no action plan if I flare!

[Lysistrata Administrator Community Ambassador in reply to Lotti_321-]

I take it that wasn't an offer of 'this must be really hard for you with the diagnostic uncertainty and dealing with flares, would you like to talk to someone?' but rather 'I don't know how to handle the diagnostic uncertainty as a doctor, and want to make it someone else's problem by saying it's in your head'. I'm getting the first now with a health psychologist and it really helps but the second is not helpful AT ALL. I hope that whoever you see can tell them the issue is not your head and you can tick that box. And also help you to deal with the whole situation with the doctors which I know first hand is really hard.

Sadly asthma specialists are also not immune to this kind of thinking. I saw one who alternated between telling me it was all in my head and wanting to get me on Xolair. Only he actually said 'you're not mentally ill, it's just your personality' (thanks...that's actually *worse*). He also told me not to get any medical help if my peak flow was above 50% and nearly gave me adrenal crisis by telling me to stop pred cold turkey after 4 weeks on 40mg. And he is meant to be a top asthma specialist! I wasn't like his clinical trial patients, as he often reminded me, so I must be somehow difficult on purpose.

If you do in fact have no inflammation I agree that steroids are unlikely to help - they usually don't with me, but as I mentioned my steroid inhaler does, as I found out when I had to stop it for an adrenal test. Not advising it but have you missed doses of yours? What happens if you do?

I hated being on pred all the time but not having steroids as an option is also fairly rubbish. Oh and I have hayfever too btw which I have always thought was weird with non-allergic asthma, but did a bit of reading and it's unusual but not impossible. Don't think consultant believes it entirely as he suggested it might be lots of cold viruses - I pointed out that no one gets a cold only in the presence of trees and not indoors, and antihistamines do not help colds!

My clinic is obsessed with FENO and I appreciate it being used to decide if steroids will help; less so that they tell me I don't have that type of asthma but still seem to expect the markers of it in a flare. Have you had FENO done? It isn't supposed to be diagnostic but my letter still says the asthma diagnosis is supported by raised FENO in a flare - right so all the other times when the nebs and magnesium helped but I had normal FENO and eosinophils weren't real?! I don't think they can make up their mind and it sounds like the same is going on with you which I know is really hard.

I hope some of this is useful - I feel like I'm going on a lot about myself but I also know it can feel really isolating to be atypical like this so I hope it helps to know you're not the only one! I think even the specialists are still getting used to the idea of asthma as more of a syndrome, describing a wide variety of different illnesses.

[Lotti_321- in reply to Lysistrata]

It definitely more this is in your head & we don’t know how to treat it as I don’t fit in a box of diagnosis.

It is really helpful to hear from others with similar experiences so thank you!

I’m hoping the strong letter my gp is sending will help. As they agree with me that it’s all a joke! Thank you though x

[Lysistrata Administrator Community Ambassador in reply to Lotti_321-]

Ugh re the in your head A good GP on your side is definitely helpful though especially with delightful letters like that! Crossing fingers that helps, keep us updated if you feel up to it.

[Lotti_321-]

My gp emailed my consultant today, so my consultant secretary called me to arrange an appointment for Monday!

Has anyone heard of paracentral bronchial thickening? That was mentioned on an X-ray report.