What's the biggest challenge you face... - Asthma Community ...
What's the biggest challenge you face in managing your asthma on a daily basis? Comments welcome
Please select all that apply:
I voted for the communication one, but my biggest issue is lack of understanding/people not listening. For example, in the last few months, I have had:
A GP who believes asthma only needs treating with Ventolin, not steroids
A GP who believes asthma attacks need treating with antibiotics - even if they have not been triggered by infection of any kind.
Work colleagues who have told me that if I exercised more, I wouldn't get breathless.
And these misunderstandings are not for want of explaining on my part. The ignorance from work colleagues, friends and family is excusable in a way, since they are not medical professionals, but it's downright appalling when it comes from GPs!
This has been my experience as well. My work have been really supportive but I had loads of issues at the GP surgery when they switched my inhaler (which I made a post about). The GP even offered me a course of tablet steroids when I begged to have my inhaler changed and I was so frustrated, I didn’t need tablets I needed to be on the right inhaled medication. The asthma nurse insisted I remain with the powder despite all the issues it gave me and told me to stop doing cardio exercise!
My daily concern is fear. I don’t have an asthma consultant even though I had pneumonia following by16 months of unstable asthma including hospital treatment in A&E.
The practice nurse just seems to prescribe steroid inhalers Willy nilly over the phone and I see her annually but she doesn’t even check an FEV1
I am on Relvar Ellipta 184 mcg and Salbutamol if required
You're luck to see an asthma nurse, I just get phone calls and have to have an exacerbation to see a medical professional face to face.
The problem is that the practice nurse is not a specialist asthma nurse.
When I have an exacerbation, she won’t see me. I am told to make an appointment which could be 3 weeks away.
I despair, what kind of NHS have we been left with.
If you have an exacerbation you need to tell reception that you are having an asthma examination and struggling to breath, you should then be in the same day. I usually end up with the nurse practitioner who is not an asthma specialist and always refuses to give me prednisone or antibiotics "because of the side effects" without considering the side effects of the exacertion🤷🏻♂️
dogs everywhere- can’t be indoors where dogs have been. This includes public transport. I know assistance dogs are allowed but they are few and far between.
Omg there are so many dogs now, and people get really annoyed if you politely ask them to keep their dogs away. I’m ok in the open air, but indoors can be a nightmare. I’d love a dog but it’s impossible 😔
I have very mixed responses from people. Some are accepting, understanding and interested, apologetic even. Other’s insist they know better than you and deny any culpability or responsibility.
I wish there were designated places for dogs and their owners. Much the way children get corralled into play areas (which I object to, but that’s another conversation entirely.) I think a lot of problems could be helped if all animals were kept on leads, except in designated enclosed areas, (also muzzled - appreciate that might be controversial,) whilst outdoors. And they just shouldn’t be in indoor public spaces at all. (Apart from fully trained assistance animals that are essential.) It’s bad enough managing exposure to other people’s perfumes, laundry products, dander transfer on their clothing and belongings etc.
Why are pets being prioritised over people? People whose lives are already greatly restricted and complicated by their health needs.
I just don’t know where to start to argue for change.
The worse thing is the cough , sneeze and laugh making me incontinent
I'm emphysema stage 4 my problem is struggle with breathing and lack of people understanding
Biggest issues for me: triggers popping up that I can't get rid of; trying to communicate with healthcare professionals who don't want to listen but make a lot of assumptions; asthma getting in the way of life and sometimes wrecking my plans with a random admission.
I considered putting exercise, but that's only an issue for me when asthma is more flared up - still a problem when you want to book a series of classes and don't know if you'll be able to go to them all, or will have to miss half because asthma is playing up!
I will say it can be hard at times to find advice on exercise for people with severe, poorly controlled asthma. Your website had a page before about exercising with severe asthma which was great, but now I can't find it! Please bring it back if it's gone, along with the one about talking to people about severe asthma which I also can't find (or have they moved?) They were so helpful, and it was nice to feel like there was specific advice for those of us with ongoing issues.
It often feels like a lot of advice out there either assumes someone is elderly with COPD, or young with asthma that can be controlled (so many pages start with 'see your GP or asthma nurse to get your asthma under control'. What if I can't but I'm still wanting to exercise, and being told I should exercise but not given useful advice on how to do it by my team? )
I have severe asthma and find Aquarobics really helps
Thanks! Will have a look 
I was torn between recognizing and avoiding triggers, and other. For me, other is that I have developed COPD along with asthma, and it is so difficult to tell which is causing me trouble. It is a constant struggle for air, as COPD is is always there. Always getting worse.
Working out whether my symptoms are caused by difficult asthma or paradoxical vocal fold motion or both at the same time. It's very isolating.
agree with previous comment- dogs everywhere now, especially in cafes. Hard to go out.
Also difficult to see a GP, poor communication, tests repeatedly not actioned
For me, tree pollen. It's slowly starting to come back and last year it was a nightmare for me and I was rushed to hospital 8 times. I can't do myself to control things. On prednisolone permanently at the moment. I do have a biologics MDT in March.
Thankfully my asthma is controlled now but too many years using inhalers has made my voice a mess. Sometimes I'm fine, other times I squeak and can hardly be heard!
Getting the right diagnosis!
Five years ago I was told my lifelong asthma was COPD. Since then I have struggled with COPD medicine, monthly flare ups and daily use of reliever inhaler. In desperation last month I paid for a private appointment with an experienced respiratory consultant. Outcome: I do not have COPD. Now on right medication for allergic asthma and have used my reliever inhaler only twice in three weeks.
How it restricts me being outside when it is cold.
Despite being on biologic therapy, fexofenadine, flutiform and montelukast, I have a daily phlegmy chest. I'm always coughing and sometimes have difficulty removing the phlegm from my chest. When I cough in public, it can be embarrassing. I don't always think people believe me when I say, "I have asthma!" I have my first appointment with respiratory physiotherapy at the beginning of March. Hopefully, this will help me. 🤞🏻
Hope your appt goes well made a big difference for me introduce carbosisteine and aerobika device for clearing my chest
Thank you 🙂
telling people that simply putting their beloved cat or dog outside and vacuuming before I visit won’t stop me wheezing if their pet regularly uses that room
Other, getting repeat prescription for Ventolin, which can stop a reaction from becoming a full blown attack. Advise like steer clear of triggers isn't helpful when there are so many.
I recognise my triggers but being on public transport or in an airport, I cannot escape the overuse of perfume, Hairspray, skin products & heavy perfumed laundry clothing! 😏😡
I find it really hard as I don't get the typical wheeze and cough so I often get dismissed that and hospitals don't like people just being on fostair, I get told I should be on a blue as well. As someone that's only known for 3 years it leads to such confusion.
Terrible side effects from medication. I have been over prescribed and am having trouble working out a minimum level of the many medications. At the moment I am managing control with just the one from the four given and even just that is causing side effects that no-one cares to address.
other = not being able to go over to our loved ones' homes (or have them over) due to the severity of my allergic asthma to cat/dog dander; it makes socializing so difficult
Us too- it affects the whole family. My children can only see friends out doors, or else strip at the back door shower and wash hair if they have been any where dander-y. Which usually means additional expense of detergent, electricity, washing machines wear out quickly and need replacing immediately. Currently I am mostly bed bound by fatigue, due to long Covid or chronic fatigue syndrome - so additional laundry is out of the question .
Family get togethers have to be outdoors. Our world has become very small.
As for finding a dander-free used car, well, any suggestions gratefully received.
Me too. A quick dust and vacuum really doesn't work. Then people get upset that I don't visit. I can double my fexofenadine and still be bothered by dogs.
I've now decided it's tough. Ifvanyones got a dog then I'm very allergic. I can't visit. Life really is to short to suffer on account of people's lack of compassion and understanding.
My biggest issue is the GP surgery/asthma nurse. I don't feel understood or listened to. I'm constantly in fear they will put me on steroids/inhalers I don't need so I avoid having any contact with them. This means that I have no idea if my asthma is properly managed/under control and instead of feeling supported I feel like I am just getting by.
i have been to hell and back,the past months,asthma do bad back and forth to hospital as I couldn’t breathe.xrays done etc etc.paud for a private consultant and diagnosed with aspergillus.now i am on track again and things much better,but not once did my dr take me off ventolin and give me something else.it was only because i spoke to asthma uk and the nurse recommended fostair,i told the drs and they gave me fostair.then a more senior dr who i hadn’t seen for a long time apologised months later saying my inhaler should have been changed etc etc.i have lost faith in drs they have no clue whatsoever about asthma.
Avoiding triggers. Something's are outside our control, or if avoidance is within our control we become hermits and cannot care for our families. The entire outside world contains triggers.
Going into shops etc that have essential oils burning and visiting friends with air fresheners everywhere.
My biggest challenges are:. Allergy triggers, some are impossible to avoid. I think the gov should ban perfume!!
. Dr's assuming that if I don't wheeze then I'm OK. Please can someone explain that i dont have to wheeze, my sats don't drop until I'm nearly dead and I'm not going to go out of my way to see them if I can easily breathe.
Also, I'm a lifelong asthmatic and NO, it is not anxiety!!!!!!
doctors full stop. my hospital one is a horrid now discharged me when they have cancelled my apps and swapped them about but when i have to its a different story due to work as i get disciplined. i now have nothing so do i breathe or go to work to pay the bills.
I voted for other because even though I was diagnosed with Asthma via a blood test at 65 years old I can't say I have ever had an Asthma flare up.I have also been diagnosed with Severe copd as well. Brian
As well as Late Onset Asthma (diagnosed in 2019 @ the tender age of 73), I have left ventricular hypertrophy - the symptoms of which echo asthma very closely, making it somewhat difficult to differentiate between the two. I also have severe mobility issues plus, non anemia or vitamin B/Folate related Macrocytosis….again making thing difficult to decide which is causing the the symptoms.
Sometimes I just struggle to look after my asthma.... nebbing, injecting, inhalers and tablets.
It’s difficult with a full time job, kids and elderly parents who all come first.
I know there are people much worse off but sometimes it’s just too much to look after myself.
😊
Communication with medical personnel was a huge issue for me some 4 years ago now! Eventually I was diagnosed with severe eosinophilic asthma privately. Whilst being a life long asthmatic, I was not aware of this subtype of asthma at the time. My point is that at some point, I was offered counselling by a GP which I found extraordinary!
I'm so sorry you have experienced similar issues and yes agree, God forbid they listen to the patient!! I actually ended up on the steroid inhaler as part of a medical study - if they got 'x' number of people on steroid inhalers onto the study they got to keep the equipment used in the study! No thank you! Lol
It's such a joke. Even this website is set up by a company that produces pharmaceutical goods. Hence no option for "being put unnecessarily onto steroid inhaler". Where profit rules how can we ever trust? Quite simply we cannot. All the best!
Hello, thank you for sharing your thoughts, we want to remind everyone to engage in discussions respectfully and avoid defaming groups including pharmaceutical companies or health professionals. It is important to have discussions that are based on accurate information and we are keen to keep the dialogue constructive.
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Polls are updated monthly by the A+LUK nurses to gain insights on hot topics and identify areas that require more information for our forum users, and to generate healthy peer to peer discussion.
You could have selected 'other' as many of us have already done when our issue wasn't listed.
That's right. Selecting other then asks for the person to comment. Thanks
If you feel steroid inhalers are unnecessary for you, don't use them or discuss with your GP instead of kicking off with people you don't know.
Apologise to ALUK if that's a bit strong.
I would like to see a future for us all where people are informed to reduce the causes of their asthma.
An open sharing of wisdom, widely and freely so that drug dependency lessens rather than increasing, improving the lives of those affected by the causes of asthma and the side effects of the drugs.
We can achieve this if we determine it to be so for the benefit of society as a whole.
I'd like to see a cure for asthma too, as would probably everyone on this site.
Until then, there's still value in treatments to *control* asthma. And actually steroid inhalers and other treatments, while not perfect, are not just controlling the symptoms, they are addressing the underlying inflammation. They just can't do it permanently right now, which is why people have to stay on them so they keep working. This is what you call drug dependency. Yes, it would be ideal not to need ongoing treatment, but it's better than dying from asthma.
HIV is also treated currently with ongoing drugs to reduce viral load. It would also be great to have a cure for that, but the treatments have taken it from a death sentence to a condition people can actually live with and have relationships with.
Your experience with asthma and treatments is just that - your experience. It doesn't mean other people with asthma are blindly hooked on drugs and unaware of any other options. Or that we'd all be better if we gave them all up, or tried to reduce them for the sake of reducing them.
As you'll notice from other posts on here, it can be very difficult to avoid triggers entirely, and trying to do that can be unhealthy in other ways.
And causes of asthma can be complex and arising from things we aren't currently able to control. Such as genetic factors, being born premature, or having bronchiolitis caused by RSV infection as an infant. There's progress there, but it isn't perfect yet and won't help people who already have asthma.
Same with air quality - it absolutely needs addressing and improving, but meanwhile we still need to be able to treat asthma, even if we can't get rid of it completely.
If you can manage without steroid inhalers, that's wonderful for you, but it's not possible for everyone. My GPs reluctance to prescribe them meant that I was struggling to breathe on a daily basis.
I'm sorry this is the case for you at the moment. I was in the same position years ago. Sadly, no one ever wanted to help reduce the causes, simply prescribe for the symptoms. Why?
By causes my opinion is air quality and there are moves to improve air quality, which I think is the reason for a big increase in the number of asthmatics over the last 50-60 years to my knowledge. There has been a huge tightening in the regulations for businesses to filter the exhaust from their factories, clean air zones in cities to reduce pollution levels, smoking bans in public places and now the move to electric and hydrogen transport. So once the underlying problem has been addressed we should hopefully be able to cope better with other triggers therefore requiring less steroid. But having taken 200 years of uncontrolled air pollution it will not be a quick fix so in the meantime we have to go with the only currently known treatments with steroids being the main one.
