anyone suffering from neutrophilic asthma? How was it diagnosed?
I keep getting chest infections and needing loads of abx, wondering if this could be neutrophilic asthma. Ct found no bronchiectasis a year ago.
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neutrophilic asthma
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Hi, I didn't know that was a thing. I'm the same, my GP calls it 'asthma with a propensity to infections '. He's allowed me a prescription for prophylactic antibiotic Azithromycin 250mgs to be taken Mon Wed Fri during November to April. This is normal for people with Bronchiectasis. I've got asthma and Small Airways Disease, in the past I had back to back infections as well as 5 x pneumonia. This winter regime has saved my bacon.NB we're all different of course so may not suit everyone......some are given Doxycycline as a prophylactic winter ab.
I'm really sorry to hear that. I'm just in neverending loop of either infections or hayfever lasting half a year.
How did you get yours to prescribe maintenance abx? Wonder how to convince them to try.
How were you diagnosed with small airway desease?
Small Airways Disease was dx by consultant, I suppose from tge CT scan. I've got a permanent memory of going through my lungs from top to bottom seeing the damage left from infections (many left untreated) & pneumonia . It was a brilliant respiratory nurse who insisted to the GP that "as I had bronchiectasis I absolutely must have prophylactic abs with my history " . She also insisted on another referral and other things which gp ignored & I i didn't get. I was just glad to get the winter abs & don't want to kick up a stink in case they're taken off my prescription.
I need to change my gp practice, I've not had a review since 2018/19 & I've definitely worsened.
Just good luck to you. Peege
Hi! Thank you so much for sharing. It was very helpful for me to know. Did you survive this winter ok?
Did you develop bronchiectasis before the small airway desease?
Yes! I began the winter Azithromycin in December (it's prescribed for November to April but I keep some back in my medication box for any future infections because it's so impossible to get a timely appointment at GP 🙄). Some people more severe than I take a prophylactic antibiotic permanently, some take Azith and some take doxycycline.
This winter I've escaped infections which is such a boost for me as last year a had a chronic one in Jan '23 which took months to come back from then another in June.
Back in 2013 bronchiectasis wasn't diagnosed that I know of, the great respiratory nurses insisted I had bronchiectasis but I only have the hospital's letter stating Small Airways Disease - someone told me that's the same as bronchiectasis but I certainly don't have that in writing. The winter abs are certainly a life saver for me, I'd be a wreck without them.
Wishing you all the best sciencepotato.
I'm so so glad the abs are working for you! Long may it continue. Do you get any side effects? Is it easier to clear sputum with them that it was before?
Did you have any symptoms of small airways desease / bronchiectasis before diagnosed?
Thank you so much for your kind words and wishes! Wishing you all the best too xx
Never had/have much mucus except during exacerbation &/or infection. Had many infections back to back for 3 years before referral (hence progression to S.A.Disease) and took a couple of years to claw my way back to a form of good health. Uncontrolled asthma had a .ot to do with my worsening lungs, I didn't really know enough about increasing inhalers or using Ventolin at the time so immunity was rock bottom. For the past few years I've taken lots of vitamins minerals etc to keep up immune system.
Carbocysteine daily helps keep mucus moist & easy to expel, only a little daily though on normal days. ××
PS I'm no expert, this is just me 😉
That's really reassuring that you got better over time and I'm so sorry you had to go through so much stress and so many infections. Of course, I understand it's your experience only but I've only had asthma for a couple of years and chest infections back to back only started half a year ago when my kid started to bring every bug home.
I'm not really sure if I'm even supposed to use ventolin frequently during infections but that seems to be helping a lot in opening the airways. I agree mucus loosener helps a lot! And yet during my last infection my mucus was so so sticky and dry I coughed my lungs out to expel. And only managed to do that after steroid course 
do you have any routine for aiding to expel mucus?maybe steam helps? I realise of course it's just your experience and not a medical advice!!
I personally do find steam helpful, some people don't though so it's trial & error. A steamy shower of from the kettle helps me at times. When my son was little a kettle quietly boiling in the corner of his bedroom really helped ease the incessant night-time coughing (that and holding him upright all night). It's a massive learning curve especiallywhen you're fairlynewly diagnosed, and learning about your own conditions and triggers is so important (as well as avoiding the children's bugs)! ×
Oh it totally is steep learning curve :/ not sure I'm a good student 
yes I agree I find steam very helpful at least for soothing my airways!
How do you distinguish between infection and asthma flare? I usually don't have much mucus to cough out and not sure is it because there's none or because it is stuck!
I really wish there were more appreciation generally in how different asthma can be for different people (not from you I mean as you understand that, but healthcare professionals and public). I was reading this and thinking eek steam makes my lungs WORSE, I would be in a state with steam all night! But clearly it's helped you and your son. So confusing when you can't be sure what may help or do the opposite isn't it?
Oh I know what you mean . For me it can actually vary - if airways are too inflamed then I find it even painful! But if not and want to soothen the dry airways and possibly get rid of extra annoying mucus then it's helpful. Asthma is so so complex 🙈
Oh and wanted to add that whenever my consultant can't explain something about my symptoms he says it's my breathing pattern disorder. I keep having infections or asthma exacerbations and he blames my breathing pattern disorder as all my lung function tests, mri, feno show up normal / controlled on my current asthma meds...
Oh, mine too! It's the go to for some of them it seems. I'd really rather that if they don't know what's happening or why they just SAY they don't know! I think they get taught not to admit that in front of patients, when many of us would really prefer it to being blamed or just told it can't possibly be asthma. Especially when they don't understand that asthma is variable.
I was firmly told by the specialist respiratory physio years ago that you can't possibly sleep through asthma and if I could fall back asleep, any shortness of breath wasn't due to asthma. Only to see that more recently ALUK's medical team were saying that you could have a bad night with asthma without being aware of waking up necessarily, and that you shouldn't fall back to sleep without resolving your asthma if you do wake up!!! So basically the physio hadn't heard of that before and was still insistent it couldn't be asthma, instead of just saying she wasn't familiar with that happening but maybe it was different for different people.
I have found too many healthcare professionals insistent that you absolutely must tick all the boxes all the time or it isn't asthma. Perhaps if they were open to listening to patients talk about how it is for them, they would be more willing to acknowledge the variations.
Couldn't agree more! I wish they could spend at least a couple of days in their professional lives on a forum like this or fb asthma support group - they will be enlightened about asthma right away!
If I didn't speak to the fellow sufferers I'd seriously think it's all in my head and would be even more upset. Acknowledging you don't know something is a sign of strength not weakness and oh I would have so much respect to a doc like that.
But nevertheless this new doc of mine is pushing for biologics for me so I can't complain! I'm choosing my battles 😂
Absolutely, it's a flipping minefield! Reading people's health woes here I feel so lucky, I've no idea what mine's called however I do have a bit of control in attempting to keep as well as possible and understand that so many don't. I used my oximeter this morning for first time in years, it was 99, I marched on the spot with joy and it promptly dropped to 92! That might have something to do with heaving around an extra stone though, I shall take note and breathe better on walks to keep O2 up.
PS I do always appreciate your knowledge Lysistrata
Thank you! ahaha I feel like it's listening - I know if I feel smug that my lungs are behaving they'll be 'oh yeah oops so we were, can't have that can we, let's act up'.
Someone in my belly dance class asked the teacher how to do a particular move without hyperventilating - not a problem I had been having. I tried something similar experimentally and it somehow set me off coughing with asthma so I had to slope off to the back and take some Ventolin. That will teach me to think ooh asthma is fine in class.
LysistrataAdministratorCommunity Ambassador
I might have neutrophilic asthma, but it can be harder to diagnose as a blood test isn't that helpful - neutrophils in the blood aren't a good reflection of what's happening in the airways. This is different from eosinophilic asthma where a blood test is much more useful.
To really know if your asthma is neutrophilic, you need a measurement of sputum neutrophils which can be hard to come by - I'm under a specialist centre and haven't had this test done. This has meant I'm not really sure *what* I have. I don't have loads of infections, but I do also clearly have asthma elements that are not eosinophilic or allergic. The frequent infection type you might have is just one type of what's also called 'Type 2 low' or 'T2 low' asthma - T2-high asthma is allergic and/or eosinophilic.
To make it even more confusing, people can have more than one type alongside each other and sometimes they can change! Unfortunately there's still a lot of focus on eosinophilic and allergic asthma (T2 high) - probably because until recently, all the biologic treatments for severe asthma were for that type and there's more research about it.
EDIT as i just read on another post you're under a specialist asthma service and they're not helpful. Azithromycin regularly is a possible treatment option for people with asthma, especially non-eosinophilic it seems, as it can calm down inflammation as well as being an antibiotic. Steroids can be less useful in non-eosinophilic/non-allergic asthma.
Would probably be worth calling the asthma nurse helpline and chatting it through: 0300 2225800 Monday-Friday 0915-5pm
thank you very much, I read your reply with a great interest. This all sounds like a very complex asthma. I'd like to add that I'm also allergic and during hayfever season my asthma is horrendous too. Hence it's tremendous suffering all year round - half a year with hayfever and half and year with infections - all needing frequent steroids and antibiotics. Considering the strict criteria for biologics I'm not sure they are ever going to take me seriously. Are you on biologics?
P.S. I just had a consultation with a speech and language consultant and burst into tears, telling her that's my asthma clinic just hasn't been helpful in trying to figure out what's going on with me and how much I've been suffering, and she promised to make a MDT discussion request with the complex asthma MDT coordinator and to request that I'm discussed. Do you think it sounds promising?
I think having one person on your side can be really helpful - and then hopefully they pay attention! Crossing fingers for you as it sounds really frustrating. Especially combined with allergic asthma! I have a friend with severe asthma who has that combination - infections plus allergic asthma and it is challenging. She was on Xolair which sort of helped but recently started the biologic Tezspire (tezepelumab).
That's the only one I would ever be eligible for, but I'm not on any currently as I don't meet the criteria. I used to have a lot of admissions and that's really improved since I went freelance and didn't have to travel in to a polluted area. Which is good, but it means I don't have enough exacerbations to 'count'. And because steroids don't work for me, any exacerbations outside hospital don't count for biologics because I don't get steroids when most people would. I really wish they would find another way of confirming that someone has had an asthma exacerbation!
My asthma doesn't seem to be affected hugely by allergies as far as I can tell but I do have hayfever and some odd triggers which are sort of allergic - so it is complex, and I feel that many consultants aren't really a fan of complexity.
I get it as I think specialist centres *can* be great for some people but it can definitely be variable and some people get on with them better than others. My clinic is very focused on eosinophilic asthma really and my consultant is very rigid and a bit obsessed with FeNO. I do give him credit for getting me off oral steroids which weren't working, and for starting me on home nebs. But mostly he goes on eosinophilic inflammation, which I mostly don't have. I do occasionally but this is apparently normal (for my work I have to read a lot of scientific papers and I've found that it's normal for people with mostly non-eosinophilic asthma to occasionally have raised eosinophils).
Good job I can read these papers, because my consultant doesn't think patients can handle information it seems. I've also had an argument with him because he insists I don't have neutrophilic asthma based on blood tests. As I mentioned in my other post, you can't tell whether someone has neutrophilic asthma or not from blood tests really (not in the same way as eosinophil blood count anyway - blood neutrophils don't mirror airway neutrophils and while there may be some markers, it isn't at all a straightforward relationship. It's also complicated by the fact that neutrophils can be higher with pred and change with infection). This isn't my opinion, it's from the scientific literature, but you can't argue with him as he has to be the expert.
I really hope you hear soon about the MDT and that something good comes from it.
Thank you for your posts on the topic. I read some of them, find them very helpful. So frustrating that you're suffering a lot with all this. I'm at least find a great relief from prednisolone - but it left me with almost zero cortisol levels recently. My Christmas wish would be to be given biologics next year. I guess my best bet would be tezspire because all my bloods are normal and I've never been admitted to hospital (my asthma is only two years old however).
ugh, pred does do that. I got adrenal insufficiency from pred, but my adrenals recovered eventually as I wasn't taking more for asthma. It's likely to make your bloods look normal too as pred suppresses eosinophils. If you're having frequent exacerbations needing pred then you shouldn't need hospital admissions to be eligible for Tezspire - they should at least consider it! And look at the infections side of things too since those seem to be a major driver for you. Crossing fingers you get your Christmas wish!
Amen to that. These are my thoughts exactly to be honest. Glad I came across your posts, thanks for sharing your knowledge.
What's the plan for you asthma wise? What do they intend to do next to help you manage it?
Glad it helps!
There's not really anything more I can do at this point - it's limbo really! Annoying but it's better than it used to be and I can usually get on with things with some worse times.
I never encourage anyone else to stay in limbo though - I think there's often too much of an attitude in UK asthma care that it's just normal and put up with it.
For most people with asthma this isn't true, and even at the severe end there is usually something that can improve things. But it doesn't help when they fixate on asthma has to be like xyz to 'count' and be worth looking at.
It's so so sad that there are only very few markers that are of "interest" to the docs and if they are within normal then it seems that our suffering either must be due to something else or not "real"!
I love brains too 😂 I did PhD in cognitive neuroscience and did a few postdocs afterwards. Now I really need to get better before I am capable of doing any job 🙈
Ooh, what was your PhD thesis on? My masters dissertation was on sensorimotor neuroscience - 'Predicting the Sensory Effects of Action'. When I graduated there were some people getting their PhDs and the dean or whoever had to read out their thesis titles. I thought they were never going to get through the one on developmental prosopagnosia 😆😶
And yes to the first - just because it's less well known doesn't mean it's not real! I really hope you can get back to the brainnns soon. (I haven't forgotten about the papers by the way - it's on my to-do list once I finish some late Christmas cards).
Lysistrata Apologies for going off at a tangent, but if you had AI and managed to wean off steroids to reverse the AI, would you mind posting about how you did it, what monitoring/testing/support you had during the process etc please?
My AI is thought to be steroid-induced (although personally I don't think that's definitive yet) and my endo wants me to wean down from the maintenance dose of hydrocortisone (even before doing a day curve to work out what the true maintenance dose is for me, rather than the dose they habitually start people on), but he has gone off-grid (not answering any questions), offered no monitoring/testing/support during the process, and has even messed with my thyroid medication, even though that can result in symptoms that can be confused with AI symptoms. All-in-all, a mess. It's so rare to hear of people who actually manage to reverse their steroid-induced AI, that it would be good to learn anything possible when somebody does manage it.
Hi JumpJiving,
This sounds really difficult, sorry you're having to deal with this on top of asthma!
I'm happy to help as much as I can, though I will be honest and say that I suspect the reason I managed it is that oral steroids do nothing for my asthma so I wasn't taking them. I have to credit my asthma consultant for getting me off them for asthma, even though otherwise he isn't particularly helpful. My asthma is still not well controlled, but it wouldn't be any better on oral steroids - they just don't help me, and I'm not sure if they ever did or just stopped working.
I think it is going to be harder if you're someone who keeps needing doses for asthma. I also think there's a lot of misinformation out there including what to do for stress dosing. My endocrinology nurse basically admitted that there's a limited amount known about steroid-induced AI but she was ok with me doing what worked for me (eg tweaking the time of day I took stuff - I found I needed to take the first dose earlier. And stress dosing for a cold if it was affecting my asthma - as asthma flaring was of course a physiological stressor).
I never saw a consultant or had a day curve but I had a fantastic specialist nurse, way better than my asthma team (actually I felt like she was better with asthma too lol). She didn't try to just take me off maintenance, and she provided me with an emergency injection and contacts for her. I did get yearly synacthen tests until the end when I'd shown some improvement and then they repeated in 6 months and that one I passed. I think I was at a lower maintenance dose by then though and it was more or less ok, though I think there was something else going on as I felt shocking during my last synacthen test and it obviously wasn't adrenals!
In 2019 I had an adrenal crisis because I got RSV and then it triggered asthma - the hospital were as usually hopeless at managing anything to do with adrenals unless it was the endocrinology team seeing me on the acute admissions ward. I used to really worry they were going to kill me by being stupid about steroids, and used to make sure they didn't take away all the ones I had. They also thought 10mg of hydrocortisone was the same as 10mg of pred (it's a quarter of the strength of pred as you probably know). Endo nurse was again very helpful.
I also have thyroid problems and take levothyroxine (actually, I don't really have thyroid problems, I just don't have a thyroid full stop, never have done, my body apparently forgot to make one lol). My nurse said it wasn't really what I was there for but since she was an endo nurse, she felt my high normal TSH was too high and increased my thyroxine dosage a bit.
Your consultant, in my non-expert view, does not seem to be managing this very well, but then not all endos actually know much about AI. Can you see another one, or is there a specialist nurse you could ask to see? I never felt I needed to see a cons as the nurse handled it all, though probably not all of them are as good.
It might be worth you calling the Pituitary Foundation's helpline to speak to one of their nurses. Like the ALUK nurses, they can't treat you but they can listen and make suggestions about things you haven't thought of and what your options might be - though you'll have to carry them out of course! pituitary.org.uk/helplines/
I hope this helps! I was on a Facebook group called Adrenal Diseases Support Group which can sometimes be helpful, though some members have strong and not always correct opinions (I could not get them to understand I don't take oral steroids for asthma and they would keep lecturing me assuming I did).
By the way if you don't have a medical alert bracelet, you should really get one - I got mine from Amazon for about a tenner when I needed one and told them what I wanted on it (AI and severe asthma), and it looks subtle but still obviously a medical alert bracelet.
Many thanks Lysistrata
Thankfully, my asthma has never been bad, so whilst I am on hydrocortisone I weaned myself off my steroid-based inhaler as the endocrinology team think that caused my AI. As I mentioned in my post above, I don’t think that’s definitive yet (the endo missed a blood test and hasn't done a scan of my adrenals which another blood test suggests might be a sensible thing to do), although it could be correct. I have an appointment with my respiratory consultant in about a week’s time, so I will see what he can provide to help my asthma without using steroids (I know nothing about alternatives, of which I imagine biologics are one). Since coming off the steroid-based inhaler my chest has been worse, but that may also be because we have entered hay-fever season which messes with me big time.
The lack of knowledge about AI is truly scary. My current endocrinology consultant and GP practice are hopeless IMHO. The endocrinology registrar (who was actually pretty good) told me that the team at the hospital have never previously seen a case of AI caused by a steroid-based asthma inhaler, but that’s what they (over?) confidently think the cause is. IMHO, my dentist is far more aware of AI than the endocrinology consultant and GPs. I have located another endo at another hospital not far away who is supposed to be much better (he gets loads of 5 star reviews from patients), so I am in the process of getting authorisation from my insurer to see if I can see the other endo privately. If I cannot, I’ll try to get referred to his NHS team and then ensure my appointments are on days that he works. I do not feel remotely safe with the current endo and my GP.
My GP practice cannot even manage to cope with prescription requests to cope with sick days and stress days. They say they will fill custom requests for hydrocortisone, but then don’t include the extra used on the sick/stress days.
The current endocrinology specialist nurse has unfortunately been a bit of a disappointment too. She doesn’t read notes before making calls, doesn’t provide resources for practicing injecting (my vet came good on that – gave me a syringe, needle, bag of saline and a teddy bear to practice on), doesn’t get answers to questions that require any input from the consultant (I suspect that’s the consultant being awkward, but the nurse could at least be honest about the situation), and doesn't give any indication of when appointments might be.
I am hoping that if I have to manage things myself, that I will see improvements in future synacthen tests now that I am off the steroid-based inhaler, but I cannot even get a date for when future tests might be.
Sorry, I’m ranting a bit. Like you, I feel that they are going to kill me one way or another. First by giving me AI by putting me on a steroid-based product with no warning of the risk, no steroid card, and with no monitoring of my cortisol levels. Then by failing to take action when a privately done blood test diagnosed AI and the testing company's doctor said I needed to see a doctor within 6 hours – I had to fight to get a response at all. Now by trying to get me to wean off the drug that is currently keeping me alive, but without any support/monitoring/testing in the process, making it complete guesswork with a real risk of adrenal crisis.
All I can hope is that I get to see the other endo that I have identified, that he is as good as people say, and that my GP actually does what the new endo says needs to be done.
I haven’t contacted the Pituitary Foundation yet, but I will do. Thank you for the suggestion. I have been following the ADSHG which has provided valuable information, but which really only seems to know of one case of somebody reversing steroid-induced AI. Unfortunately, that person is no longer a member so not available to answer questions.
Thankfully, I do have a medical alert bracelet and carry an injection kit at all times.
Many thanks again 😊
I'm actually quite concerned about the possibility of having AI myself. My blood cortisol seems to be within normal range (220-280) now but last year it was 16 nmol / l for a short period of time after stopping a reducing course of steroids.
At the moment I'm having a cold but feeling a bit dizzy, very fatigued and light headed like I never used to. I had a steroid course a couple of weeks ago. Blood pressure is normal, only a little bit on the lower side sometimes. So obviously worrying if that's just asthma flaring or AI developing. Won't see the endocrinology until next year - that's how long the wait is
What symptoms did you have?
that's really helpful, thank you so much - I'm sorry you're struggling! Would you mind sending me a few links to the relevant papers on that topic? I'm a scientist too (neuroscientist), I can't stand when the consultant is speaking with me like I'm a five year old and can't process any information. Admittedly, that's probably what 99% of their patients are like. But still 🙈
I'm not sure I'd be eligible even for eosinophilic asthma related treatment - they want my eosinophil count to be at least 0.3 and this is just not happening. My difficult asthma consultant just went on maternity leave and I'm left with nothing. I was supposed to have a mannitol challenge test before she said they'd consider me for biologics but now it's back to square one and nobody seems to have even booked me for mannitol yet.
So given all that I'm not sure how the help from speech and language consultant will do anything? Do you know what that even entails when someone other than the lung consultant even submits a request to MDT?
Sure, I'll have a look though may be a few days if that's ok - feel free to remind me if I haven't! I need to remember what is in what paper. Also yay, neuroscience (that was what my masters was in, I love brains. 🧠🧠 I just have a job that's less specific now and I accidentally did some work on asthma, which was honestly a bit weird and not recommended).
I think too many consultants think all their patients can't handle the information, but even those who aren't scientists are generally adults who could understand if they got a proper explanation - and we generally have a perspective doctors don't.as we live with it. My consultant told me I should just leave it all to him and the other doctors and not worry myself about it 🤮🤮I felt like a suffragette in 1913 being told I shouldn't overtax my feminine brain with the vote or politics, just leave it to the men with property.
I've given up on the anti-eos bios - I was eligible once but they rejected me without bothering to tell me or explain why. I don't actually think it would have helped me much but I'm still cross that my consultant still thinks it's fine to not even bother to tell me or explain the reasoning. He also likes to order tests, not tell me why and not give the results if they don't need any action. I know i should ask but he'll just tell me I'm anxious, and I've been dealing with consultants for about 13 years now.
I don't actually know re the MDT, sorry - maybe the asthma nurses will know if you call. or soemone else will. It may be that her mentioning you at least gets you onto their radar - it sounds like you may have been forgotten about if your usual consultant is on leave. Which shouldn't happen but if the SLT reminds them that you exist and everything is not fine, they may wake up and do something.
Have just been seen by new respiratory consultant as my GP put in an urgent referral after a bad flare up requiring 2 lots of antibiotics and 4 weeks of high dose oral steroids. The new consultant seems to think that I may have neutrophilic asthma. Had bloods done in clinic and am awaiting results. Also waiting for new appointment to have full spirometry done. The consultant discussed treatments such as azithromycin but unfortunately I am unable to take this due to having a previous bad reaction to erythromycin.I am having tests done to see if I meet the criteria for biologics. Trezspire could potentially help my asthma but I may not be eligible for it. At the moment is used mainly for those with high feno and eosinophil count which may not be present in people with neutrophilic asthma.
sorry to hear about your suffering with asthma.
The whole idea of tezspire is that it doesn't need specific biomarkers to be high.
astrazeneca.com/media-centr...
Also, one cannot diagnose neutrophilic asthma based on blood test alone. What sort of tests are you having?
A quick update : I don't have ILO as laryngoscopy shows and hopefully will now be considered for biologics.
My mannitol challenge was negative but I keep getting asthma exacerbations due to infection picked up from my small kid every few weeks.
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