Asthma affects over 8 million people in the UK alone according to the British Lung Foundation and it is a dangerous condition when poorly managed. According to Asthma UK, there has been a 42% increase in deaths amongst people aged 35 – 44 in the last year. Read, Asthma death toll in England and Wales is the highest this decade.
Visit the Healthline website for another great article which I found really interesting, What is Asthma?.
Asthma is potentially life threatening so we should take it seriously. It’s perhaps unsurprising then that it’s always easier to get to see someone about your asthma than it is for dermatology and allergies; despite the fact that allergies can get severely life limiting and fatal in rare cases. Asthma reviews have always been regular and reminders forthcoming. They can’t wait to get you in to see the asthma nurse.
Regular asthma reviews…
I’ve always recognised the importance of these reviews and always take up the invitations to get my breathing checked. Always following their advice, because I understand the importance of well controlled asthma. Having had hospital admissions due to asthma and anaphylactic reactions, which include asthma as a symptom, I have felt the raw fear of not being able to get enough breath into my lungs.
I’ve been so impressed with the asthma care I’ve had over the last few years, particularly all the zoom checkups over covid. I can remember being really wheezy in 2019 and 2020 and being terrified when Covid hit – fearing that if I caught it, I might be really ill. I think I must be the only person to not catch Covid (fingers crossed) so never had to face that particular challenge.
That seems like such a long time ago now, a distant memory, and so much has changed since then.
It’s important to keep up with regular asthma reviews, but the last few I’ve had, one on the phone and the last in person, have confused me greatly.
Confusion from my asthma reviews
I’m approaching asthma and breathing from a different angle now. Since my asthma had pretty much disappeared for over a year I’d not been using oral steroid preventative inhalers. I haven’t needed to. However the current pollen load has affected my breathing. So I went into my latest asthma review full of hope and lots of questions.
If you’re reading this blog you will doubtless know about my experiences with topical steroids and the damage they’ve done to my skin. Forgive me for being cynical, but when a nurse smiles at me and tells me I just need to go back on the oral steroid preventative inhaler and that it won’t do me any harm… the chill struck my bones.
I can’t trust anyone now. I don’t think I’ll be able to ever again.
Weird things your asthma nurse might tell you
There were many things that caused me concern and I left feeling frustrated and in tears, far from my previous experiences. I felt like the nurse had her set spiel and couldn’t see through to the patient beneath, and some of the things she said just made me question everything else.
- Your blue inhaler is damaging your lungs – This is what my asthma nurse has told me on two occasions now. I’m pretty sure this is complete nonsense or they wouldn’t prescribe them. It really scared me. I’d been managing my asthma really well and only needed it on the odd occasion, but when my wheezing got a little worse she told me I’d be damaging my lungs with the blue inhaler. I think this is just a scare tactic to get people onto oral steroid inhalers. As someone who has some serious PTSD about ever using steroids again this is a problem for me, a huge problem. I wanted to be able to discuss natural therapies or things I could try first. There was nothing offered except to try antihistamines, which I also have issues with – more on that in a future blog. I just don’t believe the blue inhaler is dangerous and when I questioned her she threw out comments about lung damage and I just found myself doubting. These blue inhalers can’t be bad for our lungs. You only need a preventative inhaler if you are using your blue one more than 3-5 times a day and it becomes ineffective. I’ve been using mine once a day when I’ve needed to, which is pretty infrequently. Certainly not even once a day, probably once a week, if that. I can go weeks without, and during this recent mild flare up I’ve had the odd day when I’ve needed to use it, but certainly not 3-5 times a day, and it works like a treat when I do use it. So why, when the NICE guidelines detail that 3-5 times a day is not good, is this nurse so adamant that I should be back on oral preventative steroids? I’m not using my blue inhaler every day just on the odd occasion and I suspect it’s pollen related.
- Steroids, steroids, steroids – Why is this the only treatment available? It makes me so angry, because the more I read about this drug the more I fear it’s not that effective for many conditions. The side effects and potential damage are a worry too, but no research is being done on this. I know asthma is serious but why don’t we get told about all the amazing therapies and techniques that could really help us live normally without medication?
I don’t want to diss the NHS, they do a great job, but they really to skim the surface of every condition, never look deeper, never explore food, allergies etc. and NEVER look at how someone is breathing which seems crazy to me. Once again it’s getting someone onto a medication for life. I’m just very cynical now.
10 things your asthma nurse won’t tell you
- How to breathe properly – 6 Breathing exercises for severe asthma – My asthma nurse gave me this today, but only after I told here I had been working a Breathing Coach, Kelly, (see below) and it was already helping after just one session. Printing out a PDF and sending a patient off to explore and teach themselves new breathing techniques seems problematic to me. Surely we need some guidance and advice. Perhaps even help on how to learn these breathing techniques and also advice on understanding which might work for us. It felt like yet another tick box. Gave patient breathing techniques handout – tick! And she only did this after I brought up trying to learn to breathe properly.
- TSW and Asthma inhalers – I’ve been told by medical professionals that it won’t affect my TSW but forgive me for being sceptical. No one knows. No one is researching this. No one recognises TSW as even a real condition which is still quite frankly baffling to me. Doctors told me topical steroids were completely safe and they’re not. So I can’t trust anyone now. It’s a deep rooted fear now.
- Stop taking the blue inhaler before exercise – I now believe this could be poor advice too. Using the blue inhaler before exercise can be really wise move, particularly of you have exercise induced bronchia dilation, which I believe I may do. No one has ever taken the time to assess my asthma properly however, so I don’t know for sure. I’ve only ever seen a nurse and no disrespect to nurses, but they pretty much focus on peak flow, how to correctly use inhalers and getting you on the medication when you need it. Nothing else. No deeper diving or looking at other factors. On a recent session with a breathing coach who works with athletes who have asthma, she told me it was actually wise to keep using the blue one BEFORE exercise as I had been doing before. Better to prevent any asthma than to just wing it and wait to see if I start to get breathless and then react.
- ALWAYS use a spacer inhaler – I’ve always had one of these but previously only used it with the preventative inhaler. The nurse prescribed me a new one of these, despite the fact that I showed her my perfectly good one. This just infuriates me, I told her it was a waste as the one I had worked fine, but she said they were doing this for all patients, so I know have yet another plastic item to throw out. Can we not think about this? If I have perfectly good one why replace it? She didn’t urge me to use the spacer when taking my blue inhaler though. However having had a session with a Breathing coach this week, Kelly Mitchell, who worked for many years for the NHS teaching asthma patients how to breath properly, she told me to use if when taking the fast acting blue inhaler too.
- You do have a choice – The asthma nurse said this to me, ‘You have a choice’ and I know she was trying to be kind but there seems to be only one way, the oral steroid way. There isn’t much point saying to a patient ‘you have a choice’ but giving only one option to choose from. I think because TSW is so poorly understood there is now way of me knowing whether my skin would be affected or not. I mistrust steroids so deeply
- Seravent – long lasting inhaler – The recommendation is that this only be prescribed alongside a preventative steroid inhaler but I don’t understand why. I’m going to try to find out more because I have friends going through TSW who have been able to get this medication. Thanks Hannah for sharing this with me, as of yet I have not been able to get this medication.
- Kelly Mitchell, The Breathing PT – Check out The Breathing PT for advice on learning to breathe properly. Special thanks to Anja, another TSW friend who recommended I speak to her. I really think I can learn something here. I know I don’t breathe properly because for years as a child I couldn’t breathe properly through my nose, so I became a mouth breather. I know it’s not the best way to breathe so I’m trying to train myself to be a nose breather but I also notice that in stressful situations I mouth breathe, and that’s also the times when my breathing worsens. When I run also I find it hard to nose breathe and will be working on trying to do this. Back to basics, slowing down and making sure I’m getting this basic function correct over any speed. I had a short consultation with Kelly and she assed my breathing and it’s not good. I can feel that I only breathe into the top part of my lungs so that’s what needs to change. Kelly told me that Looking at how you breathe when you have asthma is so important. We know about 40-50% of asthmatics have poor breathing patterns – including mild asthma, so independent of severity. When I worked in the NHS I would be horrified by the inclination to increase medications instead of referring to a physio for breathing pattern work. It’s in the NICE guidelines that every person should be assessed but in practice it’s really rare which is such a shame. I’m going to be working with Kelly to see what can be achieved here. I’m not even going to try going through the NHS because it’s already crippled. My asthma nurse told me this kind of therapy is usually only offered to people with chronic lung conditions. So the rest of us just get put on medication without trying anything else then. Same old, same old.
- Breathe by James Nester – So many people have recommended this book to me and I think I’m going to have to buy it. If you have asthma and it bothers you and affects your day to day life, invest in your health and become an expert.
- No more allergies, asthma or sinus infections by Dr Lon Jones – I’ve just treated myself to this book but it’s quite pricey so I’m found a second hand copy. It was recommended to me by Tam a fellow TSW warrior and follower on social media who said it really helped her. It’s only available in America. Diet most definitely can affect breathing and exacerbate asthma so check out my Elimination diet for asthma, allergies and eczema.
- Peak flow readings – It’s really important to take these regularly too and I’m terrible at remembering. I use a Smart Peak Flow gadget that connects to my phone via an app, however comparing it to the a traditional peak flow reading done with the nurse, the Smart Peak Flow reads much higher than the manual one the nurse had. It’s still a guide though; note down what your healthy peak flow is and monitor it is your breathing deteriorates. Ask for a peak from from your surgery or get a Smart Peak Flow. Visit https://smartasthma.com/
- Nose taping – Another way to increase nose breathing. You can buy nose tape relatively cheaply. I’m not going down this route yet as I’m probably allergic to the adhesive on the tapes, but the idea is, if there are sinus issues. the tape helps allow easier nose breathing. I know I snore at night so I may explore devices that help train me to only nose breath at night too. I think the snoring happens when the mouth is open.
- Shut your mouth! – Apparently most asthmatics breathe abnormally, through their mouths, too deeply and either too fast or too slow. Read Does taping your mouth shut cure asthma? And just start to notice, are you mouth breathing? If you are you need to work on breathing more through your nose and there is an art to rediscovering this lost skill. We knew how to breathe properly as babies but we forgot how, usually due to blocked sinuses.
- Magnesium can help – This has been shown to help improve asthma as it reduces inflammation. According to Healthline, “It’s possible that magnesium may help stop an asthma attack by: relaxing and dilating your airways reducing inflammation in your airways inhibiting chemicals that cause your muscles to spasm increasing your body’s production of nitric oxide, which helps reduce inflammation.” It’s even given intravenously in hospital in some cases of acute asthma. Check out Magnesium in Prevention and Therapy. Gröber U, Schmidt J, Kisters K. Nutrients. 2015
Read the NICE guidelines on Asthma diagnosis and treatment here.
I have never actually seen a specialist about my asthma
Can you believe that? Never. Not once. Despite now being 49 years old I’ve never actually seen a specialist about my asthma. I’ve never had it assessed or been given any expert advice. I think asthma nurses do a great job but I feel like we’re missing something here. And we don’t connect the dots between gut health, allergies and skin conditions. I see a dermatologist about my skin and the same derm about my allergies. Yet me asthma is reviewed separately. I’ve always thought this was a little odd.
An update on my asthma
After a month of working on controlling my allergy symptoms with anti-histamines, the lesser of two evils, my breathing is significantly better. I’ve also had two sessions with Kelly Mitchell, a breathing coach (details above) who is helping me explore my breathing and helping train me to breath normally again. There is a lot to this, is a complex assessment and many things have come up. I now have daily breathing exercises to do (which I’m finding very challenging and uncomfortable) so I’ll do another blog about what I’ve learned from Kelly at a later date. Guys its blowing my mind!
I had a follow up session with the asthma nurse this week and despite my readings being better on both the questionnaire and my peak flow (today at 400) she STILL mentioned that I should taking two puffs of Clenil twice a day for two months, then wean off slowly. To one puff morning and night, one puff a day, and then every other day. etc. These reductions would be done after seeing a month with no symptoms. However she was happy to see me knowing I have the Clenil but don’t as yet plan to use it. She agreed my asthma was now well managed so why still the insistence on taking oral steroid inhalers? I do understand, she has a job to do and that is to keep my safe. And I’m not stupid. If I can’t control this asthma flare with antihistamines, diet and breathing then I’ll go back on the preventative inhalers. It’s just such a deep rooted fear for me now. If they lied about topical steroids are they lying about the oral steroids in inhalers too?
What else am I doing?
The other things I’m doing are using a Saltaire salt inhaler to help me with nose breathing. I breathe this inhaler in through mouth and out through my nose or mouth but not into the inhaler. The saline salt air creates a better environment for the lungs. I also have an oxygen machine that I use with a mask which I try to do as often as possible, when I’m watching Netflix of reading. This also helps me breathe better, helps healing and reduces inflammation.
Do you have asthma?
What are you thoughts and experiences with asthma? If you have TSW are you also an asthmatic and are you using the oral preventative inhalers? Let’s have a heated debate.
I am confused.
If you have written a book on Anaphylaxis, if not if you have been admitted, do you carry Adrenaline / Epinephrine? I presume if you have been admitted more than once you would have.
In the 1950s there were Epinephrine inhalers for Asthma that caused heart problems before the “safer beta 2 antagonist* like the Ventolin blue inhaler came along. From your age I presume that you have been using this since it came out in 1981.
There is a move to get rid of Beta 2 antagonists like the blue inhaler for similar reasons relating to cardiac problems. And like you say, for severe Asthma, there is a move away from using Aminophylline to using Magnesium Sulfate.
Clearly your Asthma nurse does a good line in bullshit that it passes you by. Lung damage.
I think things have gone to far in asking that patients never have to use Ventolin. I remember the times when I went through a 200 dose inhaler in 5 days in the 1980s. But at least I had the excuse of not having anything else. It was a lifesaver when Flixotide came out.
The latest guidelines indicate that a combination long acting bronchodilator like Serevent together with a low dose inhaled steroid inhaler is the way to go for all Asthmatics being the minimum that is allowed. So essentially this was one thing your Nurse got right. As the GPs get paid for everyone on such a combination inhaler, this explains her attitude.
However her reviews over zoom appear useless except to confirm that you are alive. The fact that you have not ever been offered spirometry is concerning. One realises that this cannot be done in the pandemic.
However, if you can afford it, there is diagnostic testing for Asthma, if there are limited providers in London. Who knows, you might not even have Asthma.
You are rather unfortunate in having to see an allergist who is also a dermatologist. Usually allergists are chest physicians who are even harder to see than dermatologists. But then again, only severe asthma patients are ever referred for such clinics now. And definitely not for a few years until after the pandemic ends.
(Quite a lot of Asthmatics who are atopics have nasal obstructions such that tape stripping is dangerous).
Hi again Rob, well where do I start. I can assure you I have written a book, Anaphylaxis – The Essential Guide and yes I’ve been admitted to hospital on a number of occasions with anaphylaxis.
I have indeed had a blue inhaler for many years, probably since the 1990s though as it wasn’t properly managed or diagnosed for a long time.
But yes my asthma nurse does do a good line on bullshit… it’s like they are obsessed with just one answer. Get on the oral steroids now! There is only one way!
I would be terrified of a world with no ventolin – even when I was taking 2 puffs in the morning and 2 puffs at night I still had asthma attacks when I came into contact with my triggers such as dust, airborne allergens such as milk in coffee shops and hay fever. The preventative inhaler never stopped me having asthma attacks but it probably did reduce the inflammation. But if I only have asthma a handful of times it seems so heavy handed to prescribe widespread use of oral steroids which have lasting and very damaging side effects like osteoporosis etc.
I don’t even know what Spirometry is… going off to google that. I would love to get myself tested properly to see if I do indeed have asthma.. I think I have been unfortunate really with my treatment. Never seen a real asthma specialist, never seen a real allergy specialist. Just get lumped with a gaslighting dermatologist who doesn’t really give me the time of day as I am refusing most treatment.
One of the big things for me, was that i had a constant constriction in my throat, mucous got stuck there and it prevented me from breathing. inhalers kind of helped but I have now learnt how to get rid of that altogether. I had to go private to a breathing coach for that.
So my research continues. Thanks again for your comment. What’s our background in this area Rob? You seem to know a lot about asthma.
Hi Ruth,
So impressed by all your work on your blog! I’m so glad that you now have had sessions with Kelly – she’s amazing!! And yes, breathing exercises can be so hard and quite anxiety-inducing, but as long as one takes it slow and in a pace that feels comfortable – it’s so worth it!
I’m wondering if you’ve read James Nestor’s book yet? Dr Chatterjee had a great conversation with him on his podcast as well. I found his book to be amazing!
I came back to your blog today, because I’ve an Asthma check with a nurse tomorrow – and I haven’t had that for years… I always feel that I have to prepare for a fight. Still taking 1 puff (but not really properly) each night of my steroid inhaler but have decided to see if I can get off it or try a non-steroid option. And I also want to look into actually checking if I have asthma at all!?
Therefore, I wanted to check if you had done any new discoveries or had any new insights.
Thanks for keeping up the good work!
Hello Anja, thanks so much for your lovely comment and for suggesting Kelly. The sessions seem such a long time ago, but I find I can now breathe my way out of needing my inhaler quite often now. Sadly I am now taking the brown preventative inhaler again. Not sure why my asthma has flared up so badly but I’m working on it. I think this time of year it’s pollen, and when that eases I don’t need the inhalers much at all. Very frustrating, wouldn’t it be amazing if we could get immunotherapy. I will continue to ask about this, but so far no, no new learnings Must get back to the research, and feel I’ve failed somewhat to be back on the steroid inhaler, but life is precious so needs must at the moment. Take care and good luck with your asthma review. If you can go with peak flow readings to hand to prove you’re controlling it really well that will help. Good luck!