I posted before about my atypical asthma, as there are quite a few people with similar symptoms that have also been dismissed I thought I would share my results. Additionally if anyone has any insight, would be interested to hear.
I pad to have a lung function test at a hospital to get some answers and to get something solid next time I am dismissed.
I have inflammation in my small airways and I didn't respond to the salbutamol test. He said it could be I was having a good day or that it's not getting into the small airways. No wonder when it got bad and I took 10 puffs nothing happened.
I found it interesting as it explains a lot. My peak flow doesn't increase that much after taking it until I clear mucus. He explained that it can help with clearing mucus and they prescribe it sometimes for that perpose. A&E doctor said I shouldn't use it to clear mucus. Wrong.
I am not fully emptying my lungs so am mixing fresh and stale air.
He said that I wouldnt feel it sitting down watching tele but would when walking up stairs. Spot on!
I have said I have non weezing asthma but when forced to completely empty my lungs, there was a definite wheeze. So the doctors who checked me for a wheeze and said I was clear weren't factoring the small airways. The way they listen would only show the wheeze if the obstruction was in the bigger airways.
I will learn more after the results are reviewed by a consultant.
I am not sure what the treatment options are if I don't respond to salbutamol. The Symbicort clearly hasnt resolved the inflammation yet.
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BlueBlobs1
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If you need inhaler medication to reach the smaller airways then an inhaler with extra fine particles is better than Symbicort. Fostair definitely has fine particles and may suit you. Have a chat with your Asthma Nurse or Asthma UK about available extra fine particle inhalers.
Hi, I have a similar problem, in that I am non wheezing but have a lot of mucus. When I use salbutamol it shifts some of the mucus, but when I have a flare up it takes ages for the mucus to shift. Also my peak flow doesn’t alter much during a flare up and my sat’s are ok even when I’m really out of breath. From what I’ve read on the forum, it seems that my problem is in the smaller airways too. I used to be on symbicort and then a few years ago I was changed onto Duoresp, which the doctor said was the same. Is this correct and if so do you think it would be worth a move to Fostair?
I find that with a flare my mucus gets stuck too. Things I do to help is drink lots. I use electrolyte powder to help. I have a salt nebuliser. And I use guaifenesin. Then I use my peak flow to dislodge it. More I can get up, the better I feel. I just looked up Duoresp, different steroid to forstair. It's got to be worth trying if what your on isn't dealing with the mucus.
Are you in the uk? Where do you get a salt nebuliser from and is it ok to just use without medical guidance? I was in hospital for a week a couple of years ago and after a few days I was taken off the salbutamol and just given the saline nebuliser and I think it helped, although I had a course of erdosteine (I think it was called) to help to break down the mucus.
I haven’t really discussed the mucus issue with my doctor. I’m only beginning to realise that it’s normal for some of us. I thought I was a bit strange not fitting into the usual pattern of wheezing and from the reaction of doctors I used to feel like I was making my symptoms up and I didn’t have asthma at all.
I’m so glad I found this forum, I’m learning so much about my personal battle with asthma from reading other people’s posts. It’s a shame you’re not given this information at the doctors. My asthma nurse is not very good, she just makes me feel rubbish almost every time I go.
I am in Somerset, traveling to Dorset for my tests and consultant. I gotthe nebuliser from Amazon. You don't need a prescription if you use only isotonic vials. They don't like people using them for salbutamol outside the hospital. You also have to get prescription for higher salt concentrations and I don't think they give them to asthmatics. But many still find the isotonic ones helpful and if the salt only helped you in the hospital might be worth giving it a go. I often find I dislodge some mucus after using it.
Regular doctors seem only to know and understand the typical asthamtic. It was very refreshing to have doctor be able to explain my asthma to me, and not to start the conversation with "I have to be honest it doesn't sound like asthma to me" which is so frustrating.
This forum and the asthma UK helpline have been invaluable.
Be warned. With asthma, saline nebs can cause worsened symptoms (even tho they do help shift mucus), and salbutamol nebs should only be prescribed by a consultant if they feel they are really necessary. They really don’t like asthmatics having them due to the potential for patient and doctor abuse, meaning they don’t seek helps when they should.
Thank you for the warning Emma. This is such a brilliant site! I’ll see if I can try getting meds changed to Fostair. If they agree and it takes up to 8 weeks for new meds to become effective, how do I keep my asthma stable during this time?
Discuss it with your team. But if you’re having an acute issue they’ll put you on pred to cover the swap, if you’re not they may just say to use ventolin when symptomatic. Speak to your GP, as they are the 2 usual options. Or you could talk to AUK to discuss it first. Hope this helps
It does help Emma.. Thank you so much, it’s so good to have someone to get valuable advice from. 🤗
I’ve learned more in the few weeks I’ve been on this forum than in the 15 years I’ve had asthma! It’s so important to know these things. I’ve felt in the past that I’m wasting the doctor’s time and that I don’t really have asthma, but not understood what makes me breathless. It was very confusing to ‘pass’ the tests in the surgery and yet still feel like I was on my last breath. The frustration and confusion is not really good for the morale.
I feel that I can now explain to my nurse/doctor what’s happening in my body and ask for the treatment I think will help me. 😁
HiWould tend to agree.. but in certain circumstances it is useful and possible ( my own situation as example) So Celie1 should discuss with her own medical team...
I’m in the very north of the county, and from here Dorchester and Salisbury are about the same driving time - we get sent to Salisbury for most things.
Thinking about it, our nearest a&e hospital is actually Yeovil, back on your side of the border - it’s where ambulances take you if they don’t think you’ll last until Salisbury 😊
That mean they'd rather take you to salisbury because they think it's better? Had that with a ambulance when nearest was bath they drove further to go to Bristol as they didn't rate bath hospital. I don't trust Yeovil A&E at all.
Don’t think so - I think it’s just that that’s where the funding goes for patients from our area... Oddly enough, my diabetes & lipid clinics are out of area in Bath, at the recommendation of my previous hospital, but I haven’t tried their a&e 😊
Definitely something to consider with your asthma nurse. If you Google "finer particle inhalers" you can research some of the thinking behind their development.
Its this amazon.co.uk/Benylin-Mucus-... Helps loosen mucus. It was recommended a lot on the Asthma reddit. I told my doctor about it and he seemed to think it was worth trying
Just to be clarify on the nebuliser - I just use isotronic salt - doesn't require a prescription. salbutamolvials to go into a nebuliser does require a prescription. They absolutely can be very helpful to people but they worry about people not going to hospital when they need to and self treating at home. I think they also worry about lactic acidosis when people self treat too. And it's also because some studies say a spacer is just as good - until you should be in A&E anyway. So I think it's not that common to get a prescription for it. What circumstances to they give people them?
Hi, it may have been a combination of things that helped in the hospital. Maybe the saline neb wouldn’t have been helpful just by itself 🤷🏻♀️ I don’t know what circumstances you’d get a prescription for them.
I’ve spoken to the doc today (one I don’t normally see at a different surgery to my own) and straight away he said he thought I needed my inhalers looking at/changing as I was having too many steroids and to book a review with the asthma nurse so fingers crossed🤞 . I’m amazed that no one has spotted this at my own surgery and suggested a change. For a few years now I’ve been having courses of 2 weeks on 8 mg a day and then a week of weaning off, twice a year. I never thought anything of it, apart from obviously not wanting to have to take so many steroids. You trust that they’re keeping an eye on things don’t you 😳. Anyway let’s hope a change to Fostair or similar will work on those smaller airways.
You do, untill you realise that no one is actually paying that sort of attention. A good asthma nurse will though. Unfortunately we often have to fight for what we need. I have been at 400 of for a week. Yesterday I did guaifenesin and a saline neb. Cleared bunch of mucus I didn't know I has and went up to 450 for the first time in ages. Not sure which helped more, guaifenesin or the saline or both together. Going to experiment to find out.
Same, so was very pleased to find out from a specialist why that was, although I was slightly list on the details. Something to do with the particles breaking up, any opening up helping it move. Then something about hairs which completely went over my head!
For a few years I was a mucus loaded, non-wheezing issue. I ended up maxed out on symbicort after a consultant saw my oversized lungs.
I couldn’t have injections as my ige levels were through the roof. I was given pred when I needed it and basically told to get on with it.
About 6 months ago I changed GP. A doctor there saw how much ventolin I used. Did a spirometry (no idea if this told him anything). Then called me and told me Forstair was finer particles and would be better for me.
I went from being maxed out on symbicort with mucus ridden lungs to a standard dose of forstair and clear lungs (note it wasn’t immediate!!).
For me forstair is magic dust!!! Of course everyone is different.
Hi, thanks for the post, that’s very interesting. I’m similar, in that I think my problem is that my smaller airways are full of mucus. Some of the time I can move it by taking ventolin, unless I’m having a flare up then I need pred and often anti biotics. I’d be interested to hear how you get on with the consultant. I didn’t quite get what you meant by ‘that you wouldn’t feel it watching tv but would walking upstairs’ what wouldn’t you feel? can you explain a bit please.
You sound very similar to me. In a flare I also stop being able to move mucus. I had to take pred as well for it to start clearing. I always think if it's moving it's good and if it stops it's bad but I'd really rather stop it completely! He was saying that I wouldn't feel out of breath sitting but would when the oxygen demands are higher like walking up stairs. Which is generally the case for me. Unless it gets super bad. I will post an update when I have spoken to a consultant. I have lots of questions for him so will share anything I learn as there seems to be quite a few of us in the same boat. Do you have an idea of what causes your inflammation? I am assuming mine in a dust mite issue. Hard to control that and will irritate the small airways.
Oh yes that makes sense,that’s exactly like me when I’m having a flare up.
I’m having a flare up at the moment, have finished my antibiotics and a 7 day course of pred but am still getting breathless so will need to ring for some more tomorrow. I’m ok when sitting or not doing much, but when I start to do something, particularly lifting or something that makes me breathe heavier I get breathless straight away.
I have no idea what causes it. When I was working I got really reactive to all airborne scents e.g. cut flowers, perfume, any aerosols, cleaning products, even someone sitting next to me with fabric conditioner smell on her clothes set me off! It was a nightmare trying to avoid them. I had to have a health and safety action plan for all my places of work (3) so my triggers could be lessened. When I retired, my sensitivity gradually improved. I suppose it gave my airways a chance to calm down, because they weren’t being constantly assaulted by different scents. I had a blood test to see if any allergens popped up but no. My asthma nurse said it was just my body reacting.
Dust mites; that’s hard! My son had those allergies when he was little, really hard to avoid. Good luck. Thanks for sharing, I look forward to hearing from you when you know more 😊
Hi BlueBlobs1. I was diagnosed with asthma only a few months ago but I had shortness of breath and palpitations for years when climbing the stairs. Otherwise I never had any other asthma symptoms and I do not wheeze. I ended up blaming my symptoms on my heart and had all sorts of heart investigations that came back normal.
Between January and May I struggled with my breathing massively, it felt like somebody was sitting on my chest, I kept yawning and gasping for air and lifting my shoulders to get some air in. Despite this my lung function test came back normal, I didn't respond to Salbutamol at all, my oxygen levels were always normal and the peak flow would drop only by 20-30 litres at my worst.
The first inhaler they gave me was Symbicort Turbohaler (dry powder) and it didn't make any difference. The doctors started blaming everything on anxiety and politely dismissed me.
Eventually I got seen by a respiratory consultant who said that she thought I had asthma but that she could be sure of this only if I responded to inhalers. So she put me on Fostair. I didn't feel much of an improvement for the first couple of weeks, it was quite the opposite. I started coughing badly , couldn't breathe through my nose at all and couldn't even finish a sentence. The asthma nurse put me on 5 days of Prednisolone and the respiratory Consultant asked me to stop taking Salbutamol (as it wasn't doing much anyway) but to use the Fostair as both a reliever and a preventer with a maximum of 8puffs/day. After a couple of weeks on a maximum dose I finally started getting better and I've improved massively since. Now I only need it a few times/week. I no longer use Salbutamol. Unfortunately, the more Fostair I use the more side effects I get as well: palpitations, muscle cramps (a couple of bananas/day help), shaky hands, restlessness. I have palpitations even if I don't use it. I still can't catch my breath when I climb the stairs.
In a weird way it's comforting to know that I am not the only one with such atypical asthma. It may be worth trying some Fostair but be mindful of the dose in case you get side effects.
Thank you. It is comforting to find people with a similar type of Asthma. I could never make sense of my symptoms before I found out it was asthma. I am curious about your lung function test. The diagnostic doctor I saw I think was exceptionally good, trained at the Royal Brompton. So I think I got lucky. My oxygen uptake was 115%, so better than expected. But he said that unless I was an athlete that was likely lung inflammation. I wouldn't at all be surprised if a different doctor would have reported my results as normal as many of the results weren't greatly outside norms. But he was able to interpret what they meant as a whole.
Hi. Unfortunately I can't give you more details about my lung function test because I wasn't provided with any other information. I was only told that "it was normal". The respiratory physiologist actually told me that he didn't think that I had asthma so not sure how knowledgeable he was or what the test showed him. It was only the Respiratory Consultant who paid attention to my symptoms and listened carefully. I am so grateful to her.
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