I’ve recently seen a new consultant, who is sending me for a ‘mannitol’ challenge test and wondered if anyone else who has similar asthma to me, has had experience of this and what the outcome was.
A consultant I saw a couple of years ago, said that my asthma is non allergic and non eosinophilic and has a different pathway to these asthma types. He also said there has been a lack of research and not a lot is known about my asthma type, but that I’m on all the medication available to me. (Duoresp 320/9, Azithromycin, Incruse, and Carbocisteine). After spirometry and FeNO tests confirmed what he had thought, he discharged me back to my GP. 🤦🏻♀️
As many of you know, it’s such a struggle when you have a flare up of symptoms and you go for help but you don’t ‘fit’ the GP’s/A&E expectations of the ‘norm’. 😖
Recently I asked to be referred to a different consultant, mainly because I’d heard of a new biologic which I thought might help.
The new consultant has a different view of my asthma and said something like, there were two schools of thought regarding neutrophilic asthma, with some consultants not believing there is such a thing as neutrophilic asthma at all. He is doubting that I have asthma as he doesn’t think I have inflammation in my airways. My spirometry and FeNO tests were ok as before (although I hadn’t been asked not to take inhalers prior to testing 🤷🏻♀️). He also said my symptoms do not seem to ‘fit’ with asthma, in that I have no wheeze; prednisolone doesn’t seem to help, as I still have asthma attacks while taking this; and the way I describe how I feel while having an attack also led to his viewpoint.
I was diagnosed with asthma 17 years ago and so have mixed feelings about what the consultant has said. I obviously don’t want to be taking the steroids; inhalers; antibiotics etc if I don’t need to - it would be wonderful not to have to take these, particularly as they have caused health problems. On the other hand I’m concerned about what could be causing the extreme breathlessness that is triggered out of the blue sometimes and then can take months to settle down.
To begin with I often felt misdiagnosed when I’ve gone to the GP’s surgery with severe breathlessness to be told the usual, ‘no wheeze, SAT’s ok, chest clear etc but I’ve been given countless steroids anyway over the years. I can’t understand why anyone, in all this time, hasn’t sent me for a Mannitol test, if this gives them a clear answer on if I actually have asthma! Even the first consultant didn’t consider that I may have been misdiagnosed. It’s just mind boggling! 🤯😤
Anyway, I wondered if anyone else has had this happen to them. I’m feeling down at the moment.
Thanks for reading. 🙂
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Celie1
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I am always apprehensive when I see a new medic. In a year and a half I have seen four and been tested four different times for asthma, in four different ways.
Outside an attack, my spirometry and my sats are OK, though feno is raised. I never wheeze my chest just goes totally silent when I am having an attack.
I have these extreme quick moving asthma attacks, my nurse calls it brittle asthma type 2, which is old fashioned, my consultant calls it severe asthma with poor control.
Spiriva stops the attacks becoming serious for me, I have not been to hospital for four months now, when I started it. . I still get attacks but they do not get below fifty percent of peak flow or so.
This mannitol test sounds interesting. If it says you have asthma, then you are used to dealing with it. If it says you do not have asthma, then the consultant needs to work out what you do have, maybe he can sort it out.
Ask the asthma UK nurse on their consultation line how accurate the mannitol test is. Does it work if you are non allergic. What is the correlation between the results and asthma. Because unless it is very accurate, how can the consultant rely on it.
I’m glad they seem to have a handle on your asthma. Spiriva didn’t help me, I’ve had Montelukast too, but again it didn’t work for me. I think Azithromycin helped when I was first put on it about 2 years ago, particularly in helping me wean off prednisolone. I’m not sure if it’s still helping as I’ve managed to get a bad chest/sinus infection and pneumonia while taking it.
Anyway, I’ll see what happens with this test. I think it’s to assess the sensitivity of the airways and if there is inflammation. He also sent me for a blood test to see what my cortisol levels are like, among other things, then back to see him in a few months for the results. 🤞
I'm now under the severe asthma clinic and they have decided that "over time there had been some variance with my spirometry, indicating asthma" ... but they also found that I have large airway collapse which is likely to be the bigger part of my issues
I've had issues with chest infections/breathing problems since I was born... so for me I was probably born with it... apparently its quite a rare condition and sadly there is still soo much thats unknown about it
The way mannitol works is really more useful for eosinophilic/allergic asthma. I've had two - one strongly positive, one negative technically but it made me cough and I had trouble doing reliable spirometry. A methacholine challenge might be more helpful as it's less specific. And make sure you look up what you need to stop and when - I've been given absolutely ridiculous instructions by hospitals and had to check myself or it would have made a false negative. (Basically I got told stopping everything the day before is fine which is rubbish - especially for montelukast which basically blocks what the mannitol is triggering).
My asthma is similar to yours, though my theory is that I have a relatively well-controlled eosinophilic side that is usually less trouble, and a less well-controlled non-allergic, non-eosinophilic side. Which my consultant doesn't really believe in, but then I don't trust what he says on this.
He may be a specialist consultant but I've had to read the scientific literature for work and a lot of it doesn't agree with him. He insists that neutrophil counts in the blood reflect the airways - not what the studies have found (you can use blood eosinophil counts to estimate airway eosinophils, but not neutrophils). He will only acknowledge asthma as asthma if it's associated with raised FENO and eosinophils - if you don't have either of those, then apparently it isn't real asthma (according to my consultant and a few others, not according to most of the literature, which mostly does acknowledge different types of asthma and mechanisms driving it).
FENO is not really hugely helpful if your asthma is non-allergic/non-eosinophilic - that doesn't mean you don't have asthma at all. Likewise, oral steroids can often be of limited to no use in this type of asthma - though it does seem from studies that inhaled steroids still help all types of asthma regardless of eosinophil level! So them not helping doesn't mean no asthma - just maybe not the 'popular' type. The new biologic, tezepelumab, is literally approved for asthma regardless of eosinophil levels, which kind of suggests that eosinophilic is not the only type.
I would also say that there are multiple studies showing that while eosinophil levels are one predictor of attacks, they're not the top one; FENO and spirometry are nowhere near the top (it's actually recent previous attacks and Asthma Control Questionnaire scores that come out on top as predictors of an attack).
My consultant basically needs to enter the real world and stop obsessing over a narrow definition of asthma - and FENO which he absolutely loves. I hate to say it but your new one sounds sort of similar, which I appreciate is not helpful! But using wheeze to determine asthma? He should know better. That's absolutely not a good indicator, it's just one sign. Nor are sats levels (I can dig out some links on that later, but I can tell you I've had dodgy blood gases with apparently 'good' sats).
I have no idea how useful this is, especially since you've changed consultant and he's saying this. But I do know it sucks having this type of asthma because of attitudes like this. The problem is that they never seem to have anything useful to offer when they say not asthma. And apart from steroids - which it would be great for EVERYONE to be less reliant on if we could - a lot of the treatments are the same. And non-eosinophilic asthma can be just as dangerous as eosinophilic or allergic.
Apologies for the ranty essay - my asthma is acting up so I have massively lowered tolerance for my consultant and those like him 😂.
Thank you for replying. As always, it felt very comforting that I’m not on my own with this. Sorry about your asthma flare up.
I did ask about the tezepelumab, actually that was the reason I asked to be referred to this hospital. The consultant said it’s still not fully licensed, but I wouldn’t be given it anyway, because it acts on reducing inflammation and he doesn’t think my airways have inflammation. This is because of the ‘normal’ results of the FeNO and spirometry. This is also why he’s sending me for the mannitol test, although from what you say about it not being helpful for non allergic/non eosinophilic asthma, I’m not sure why he’s chosen this test 🤷🏻♀️🙄. On the subject of what meds to stop, think he said 24 hours for the Duoresp before the challenge. Not sure if the Azithromycin would have any effect. I’m not on Montelukast any more, so that’s not an issue.
It looks like I’ve jumped out of the frying pan into the fire by asking for this referral to another hospital 😩. On a positive note he isn’t just sending me home without a diagnosis, (as he’s looking again at the scan I had at the other hospital and sending me for a cortisol level check,) but he has sort of almost ‘whipped the rug out’ from under the ‘asthma’ diagnosis. Where do I go from here? If the mannitol challenge shows I don’t have inflammatory airways does this definitely mean I don’t have asthma? Or just that I don’t have eosinophilic or allergic asthma? Which I know anyway! 🤔
My mind is sort of going down the path of… if I don’t have asthma will I have to stop taking inhalers? Then what?😱 or… will I have to go back to the first consultant who ‘believes in’ neutrophilic asthma? Mmm 🤔😬
Thank you again for your support. Hope you feel better soon 🤗
Thank you! My consultant ignored my positive mannitol challenge and decided the negative one meant he didn't need to do anything - but he hasn't said it means I don't have asthma. Even he has managed to admit that I do - he just keeps telling me it's controlled because eosinophils and FENO are ok....not sure if that's helpful. In your case the fact that your FENO and spirometry happened to be ok one time as a snapshot on medication really doesn't mean you never have inflammation - but he may be saying it means you don't need any further treatment.
This is ridiculous because as I mentioned and you probably know, tezepelumab specifically doesn't require evidence of *that type* of inflammation - just 3 (I think) or more flares in the last year requiring oral steroids. To me that requirement is problematic because I don't TAKE oral steroids given they don't work for me,and I think it's ridiculous that I (or anyone else like me) should have to take a medication associated with a lot of side effects, that doesn't work for me, that is known not to work for many with my type of asthma, just so I can prove I need a medication specifically for asthma that may not respond to oral steroids. We *really* need to stop using steroids as a marker of severity and seeing all asthma as being 'real' only if it has certain biological mechanisms.
Sorry, soapbox again!! I would also say your spirometry doesn't prove you don't have inflammation. He again should know better. Spirometry isn't measuring inflammation of any kind. It's measuring how your airways are behaving - which can be linked to inflammation, but isn't the same thing, and increasingly, there's an approach in the medical literature to see inflammation and airway twitchiness as separate and treat them distinctly. How your airways behave with asthma can be variable and really needs a pattern to be helpful, as a one off could get you on a good day, plus your actual personal best may be higher/lower than predicted. It's also unhelpful to measure obstruction as being below a fixed ratio cutoff of FEV1 is 70% of FVC - that figure varies with the person. And there's much more to it than a simple ratio. This consultant appears not to understand asthma or how spirometry works and is oversimplifying a LOT (sometimes they do this because they don't really like the uncertainty in this area of asthma).
I would double check the requirements before any challenge as it sounds like the consultant hasn't - you can Google and find a lot of leaflets from various NHS trusts with specific instructions.
In all honesty, while your previous consultant wasn't that helpful, he did at least understand that there are different types of asthma - and now that there is a treatment.(it's literally about to be approved finally by NICE), he may have a different view. I realise it is a massive faff when you changed consultant, but if he starts talking about taking you off asthma medications and not offering anything useful as an alternative, I would run. Or.if you're struggling and he keeps telling you everything is fine because it doesn't fit his narrow idea of asthma.
Is there another consultant at this hospital you could ask to see? I used to just ask at the front desk to see a specific one. My current clinic has various different consultants with different approaches, but you always see the same one. I am too much of a wimp to ask to see a different one and I feel it wouldn't help me currently, but if I wanted to I could probably push to see a different one. Wondering if you could look into other consultants there and try that - they wouldn't necessarily all have the same approach to asthma. You could still do the challenge, or ask about doing a more general challenge if they really want to. I assume it's a specialist asthma clinic, if you switched to get a biologic (as not all hospitals can offer those)?
I agree that our consultants sound to have the same kind of narrow view on asthma 🙄 What’s the point of giving you a test if he ignores the result?!
Thinking of tezepelumab, I’ve had about 4 or 5 courses of prednisolone in the last year so I should be eligible on just that basis. (even though they don’t help much).What he was saying was that it wouldn’t be any use giving me it anyway, because it acts on the inflammation and I don’t have any evidence of this 🤷🏻♀️. I actually don’t feel knowledgeable enough (or brave enough😬) to take him on. Are you going to be eligible for this?
I’ll see what the test results are and take it from there. I don’t know anything about the other consultants as the hospital is out of my area and I don’t want to rock the boat any more than I have.
No worries! Better today, who knows what will happen tomorrow but I have stuff to do so behaving would be good!
My asthma likes to act up anyway but as I haven't had courses of steroids, I wouldn't be eligible for tezepelumab (I don't take steroids for flares anymore because they don't help). I would have been a few years ago with all the admissions as they count even more than pred courses, but it's settled down now. Which is good, except it hasn't gone away but now I don't qualify for anything more so can be quite frustrating as I'm in limbo a lot!
I get not wanting to rock the boat, I've had so many awful experiences with consultants I don't want to either. But I put it out there in case people are braver than me lol - and it can help to know that someone else agrees with you!
Tezepelumab acts further up the 'chain' of the asthma process than the current biologics, which is why it works on more types. So not being able to prove a specific type of inflammation is again not necessary. Your consultant is really giving my eyerolls overtime...
It may be worth seeing who else is at the hospital and googling - not necessarily for their official page which will tell you they specialise in everything. But they may be on the record as having a particular interest in types of asthma and talking about it (when I Google my cons it becomes clear what he's interested in and thinks about).
Apologies again! I’ve had a few long days helping my daughter with moving house, so only just got around to my emails!
I love the eye rolling at my consultant you made me laugh! I’ll think about that when I see him again and it might make me brave enough to say something 😂.
It’s so frustrating you not being eligible for tezepelumab. As you said previously, you shouldn’t have to take medication associated with all those side effects, when they don’t work for you (or me really - I just keep thinking they will, stupidly!).
I’ve tried googling and can’t find a consultant list for the hospital 🤷🏻♀️. I know someone who works there, they might know.
Mannitol is an irritant that asthmatics react to if they are sensitive (indicating specific types of asthma) .... there is also one that's fairly broad... if you have asthma and you inhale this you will react sort of thing
But you inhale the irritant do spirometry and then wait if you react *badly* they have a nebuliser/epi/oxygen in the room so it's well controlled and you keep going until you react or you reach the end ... I did mannitol and methacoline and didn't react to either
hello I once was on a night shift at a place that doesn't get cleaned very often I was going to doctors for some result first thing in the morning after my shift well by time my 12 hour shift was over I was breathless loosening clothes I'd been stopped smoking for four months I had lost 6 st so not much or a reason to be breathless
He esent me to a&e they didn't know wot was matter with me two years later I'm diagnosed with allergy to dust n dust mite and asthma as a cause of it but had been misdiagnosed with COPD 15 yrs ago
Have you had allergy test because I think it solved my puzzle I also have sleep apnoea diagnosed same time
I’m glad you’ve been sorted out at last and they know what’s wrong with you. They certainly took their time over it!
I had allergy tests done years ago and more recently, but I don’t have any allergies showing up, even though I can’t be in the same room with fresh flowers particularly lillies. Other strong scents, different weather conditions etc also cause breathing difficulties. I asked my consultant about this but he doesn’t know why. 🤷🏻♀️
Thanks for your reply.
Also well done on stopping smoking and losing weight both at the same time 👏👏👏
My eyeballs are getting RSI now with all the rolling at your consultant! Weather changes and strong scents are COMMON asthma triggers! They're literally on lists every time I have to say what my triggers are.
I'm reasonably sure the mechanisms are at least partly understood too (with weather changes I think it's pressure and humidity differences). They're not allergies though - I think that term can confusingly be used the same way as triggers but they're not the same, though allergies can trigger asthma for some people of course.
Mind you, while ALUK and other asthmatics know about it, I also find consultants quick to dismiss some of my triggers, or try to tell me you can 'only' have specific ones (if they personally aren't familiar with it they often dismiss it instead of asking more or looking into it. I get they aren't going to look into everything for every patient, but as some of these aren't that uncommon they must hear them a few times at least).
I was literally told by one consultant that my only trigger was exercise and none of the others was real. I wouldn't even say exercise was much of a trigger for me - it only bothers me if I'm already struggling.
COMMON asthma triggers yes - but he doesn’t think I’ve got asthma, or at least not as a major problem. He doesn’t have an answer as to why I react to them, but he’s sure more allergy testing won’t help.
That’s kind of the difference between him and my last consultant , my last consultant wants to find out why this is happening to me and other’s like me and you. His explanation (simple enough for my brain 😆😆)is that my type of asthma has a different pathway to allergic and eosinophilic asthma. Although that doesn’t help me much, as he told me I’m on all meds available and then discharged me - not very helpful!
I thought I’d got a bit more understanding about how my asthma behaves and why it’s different to the ‘normal’ one, but I feel like I’m back to feeling like I’m making it all up! What I don’t understand is, how can the two consultants views be so opposing. Isn’t there evidence that neutrophilic asthma exists? Sorry you don’t have to answer that, I’m just venting 🤦🏻♀️.
Also how does your consultant get to tell you what your own triggers are?!!! ‘Exercise and none of the other’s are real’ …seriously! He should try living in your body for a while and then tell you that!😂.
Wow, he's actually right on one thing. Stopped clock and all that... Allergy testing probably won't help you much, since the underlying mechanism with this type of asthma (yes, asthma, Dr Eyeball Sprainer) isn't allergic and won't be detected by those tests. And yes there is evidence for non-allergic/eosinophilic asthma, but certain consultants are really fixated on allergic/eosinophilic as the only 'real' kind. Also, non-eosinophilic/allergic is probably a few different ones smooshed under that label, and there's less known about it/them. Some doctors don't like the uncertainty.
But it seems absolutely ridiculous that you say to him you have difficulty with common asthma triggers, but he says that can't be asthma because you don't have asthma. That's the kind of circular logic I used to get: your asthma can't be that bad, you don't have admissions. Then when I had admissions for asthma: well they can't have been necessary, you're not bad enough to need admissions (they weren't even in the same hospital and he had no idea what led to them).
Besides, those tests also told me I don't have any pollen allergies. Tell that to my nose, and my mouth with oral allergy syndrome (I have hayfever but it doesn't really do much to my asthma. Current consultant naturally has told me I don't have hayfever 🙄🙄🙄).
I'd love to swap bodies with my consultant! He actually wasn't the one who told me I only had one trigger, but he's just as bad. He keeps suggesting I'm just unfit, even though I can literally be fine one day then have major problems walking the next and be much better post treatment- no one gets fit and unfit that quickly! And every time I mention scents etc he says it's VCD (a reasonable thing to consider, but the way I'm triggered and the specific nature of the triggers doesn't fit VCD well, and he doesn't ask follow up questions).
Beginning to wonder if we have the same consultant 😂 I won't say his name on here because anyone can read this and I haven't held back. I almost hope it is though, otherwise there's more than one like him out there.
My asthma is still being a bit annoying. I probably need to contact my asthma team to tick the box.
🤞 for asthma to clear up. My (non)asthma has been playing up a bit today too. Someone spraying tables indiscriminately with cleaning spray in a cafe, while I was enjoying tea, cake and a book 🤦🏻♀️.
It's amazing how much your 'non-asthma' acts like and is triggered similarly to asthma, isn't it? But if we do share a consultant, he won't accept any evidence that doesn't fit the narrative.
So frustrating when that happens though when you're trying to do something nice! The random trigger encounters can be very frustrating. On Saturday I was at training for a volunteer position and started to eat a chicken curry sandwich without checking the label. Big mistake. Big. Huge! As Julia Roberts might say. It had mango chutney. Luckily I was able to sort myself out without alarming the other volunteers/the coordinators too much.
I hope you're feeling better now. And got to finish the tea and cake.
Oh no! Have you got food allergies too! Double whammy! 🤦🏻♀️
I’m okish now thanks. I had just about finished cake and cuppa but didn’t get far into my book. I’d accidentally left my inhaler on the kitchen table! 😱 Fortunately my husband was in and came to pick me up as I was only around the corner (but up a hill that I didn’t think I should tackle as I was breathing hard).
Not exactly food allergies - but my triggers like mango, rose, lavender etc in practice are also food allergies. Or triggers maybe, since I don't think they're really classic allergies. They're mostly airborne but if I say sniff a drink with mango then it sets me off (or even if I'm close enough to someone else's), and if I drank it I'd be exposing myself to even morefrom the inside. I once got caught out trying a cocktail which had surprise rose in it (not listed, it's not a common allergen so they don't have to).
In this case I assume there wasn't enough mango for me to notice until I exposed myself by eating it! I think I started to notice things felt a bit odd, registered that I was eating curry which often goes with mango chutney, and checked the label. Then tried not to swear lol. I was hoping I'd got away with it as there can be a small lag with this kind of trigger for me.
I have the scent issue and weather issue too! (Humidity, cold, rain). I suspect it may (partially) be multiple chemical sensitivity, as well as allergies (possibly mold and or histamine) and asthma (or whatever my breathing problem is). These are just my theories as we are all kind of stuck chasing our tails with the medical community, a lot of the time.
Agreed. I just wish some of them weren’t dismissive of the impact these allergies (non allergies) asthma triggers whatever the ‘experts’ want to call them, have on us.
My airways have been assaulted (yet again) today, by someone wafting cleaning sprays around when I’m having a drink in a cafe! I didn’t ask her not to (which I’ve had to do before, only to be met with “Oh it’s ok it’s hypo allergenic” 🙄ok for who?), because frankly it was too late!
Note to self: request for sprays not to be used while I’m in the cafe, BEFORE ordering!😬
I think public awareness of food allergies and intolerances has been raised over the last few years and people have more understanding of this, but alas there seems to be little awareness of how airborne irritants affect asthma and the sinuses. My polite requests for sprays not to be used, usually leaves me feeling a bit like a freak - but at least I can breathe 😆
Rant over! 😁 In fact, three cheers for the restaurant I went into a few years ago where tables were washed with a bowl of hot water and washing up liquid- imagine that!! 😂🤣
@celie1 are you any further into getting a diagnosis? I’d be interested to hear the outcome of the ongoing investigations you had. I like you have been told I have asthma (allergic asthma) but have breathlessness upon doing simple tasks!
I haven’t been back to the consultant yet. He did say he’d see me in 6 months and it’s probably more like 8 months now.
My asthma has been well controlled since I saw him, even though I’ve had an awful year stress wise! They certainly can’t say it’s all down to anxiety that’s for sure. I’ve even come off the Azithromycin and all ok so far 🤞.
I’ve had all the tests and everything seems ‘normal’ so I’ll just have to wait and see what his response is when I eventually see him. I’ve probably gone to the bottom of the list as he’ll definitely think I don’t have asthma now. 🙄
If you’ve been told you have allergic asthma, does that mean you’ve had tests and are on meds for this? You say you’re getting breathless have you been back to see your doctor/asthma nurse?
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