We all know that asthma is a serious health condition and if you are unlucky enough to have it, you’ll be familiar with inhalers for when you have an asthma attack and for preventative support.
It’s always worried me, especially since my own withdrawal from all medication to treat my eczema, including topical corticosteroids… should I be taking my preventative inhaler? I wrote about this a while ago and you read, ‘Should you use your preventative inhaler during TSW?’
I recently saw an article on LinkedIn shared by someone (apologies if it was you, I didn’t make a note and can’t remember) about OCS medication and how this treatment was bad for long term use. I’m 47and have been taking my preventative inhaler most of my life. Though in the last few years my asthma has been improving.
Read ‘Severe asthma and oral corticosteroids: Time to change the relationship’.
Severe asthma directly impacts more than 30 million people worldwide and their condition can mean a life of frequent, severe attacks and reduced lung function.
Politico
The article, which is sponsored by one of the large pharma companies Astrazeneca, points to severe health risks from long term use of Oral Corticosteroids (OCS). Yet my experience is that this is the only treatment being offered to people living with asthma.
As someone who is going through Topical Steroid Withdrawal, I stopped using all topical steroids in January 2019. I stopped using Protopic, a topical immunosuppressant in April 2019.
And I often worried about whether I should still use my preventative asthma inhaler.
The medical advice was to keep doing so. Asthma is a serious potentially life threatening condition, especially for someone with added complications from allergies.
Are OCS bad for long term health?
The article suggests that many using steroid inhalers see them as ‘frenemy’ and I certainly understand that. They keep you safe but you hate that you have to use them.
Special thanks to Anja Wolf for her help with research on this blog.
Dr Fukaya advises, “TSW occurs only on the skin. You should not stop asthma inhalers. This is very important.”
Andrew Williams, Allergy nurse agrees, saying “Not using Inhaled corticosteroids as prescribed (or poor care from your GP/asthma nurse) is one of the main causes of these unnecessary asthma deaths.”
Dr Ruth’s Skin Journey, who I follow in Instagram has also gone through topical steroid withdrawal. She is still taking her OCS inhaler for asthma. She is a GP who has had severe eczema, gone through withdrawal and is now on the way to recovery. Her advice is to keep taking that inhaler.
Anja found that cutting OCS caused a flare in TSW
Thanks to my insta friend Anja Wolf.
She has spoken to a few of the doctors who recognise TSW and they have given her some advice and feedback about using oral steroids while cutting topical steroids:
“Dr Jay suggests that the asthma inhaler can work as a type of immunosuppressant for people during TSW, and depending on the the strength of steroid creams the person has used, he believes the TSW would probably be worse without the OCS medication.
Dr Jay believes that people will still heal from TSW while being on asthma (steroid) inhalers but that it will take longer time. He also mentioned the importance of the sun for healing asthma – to expose the back to sunlight and that historically farmers never had asthma because they were always outside and received a lot of sunshine on their backs.“
“Dr Rapaport also believes steroid inhalers have an impact on TSW, he said even 1 puff daily of a steroid inhaler may give a slight possibility that it affects the healing of TSW.”
So basically, it could slow down your healing progress because the body isn’t able to completely withdraw from steroids.
The point about sun on the back is not one I’ve ever heard before and this is really interesting. I very rarely get the sun on my back! Worth exploring if it ever comes out again…
I’ve also spoken to others, like Helen who is on Instagram as @GettingMySmileBack who is struggling with her asthma and finding that the oral steroids are definitely affecting her skin. She takes the steroid tablets and when she stops a course her TSW will flare.
And finally, a new following who is going through TSW shared in a comment on another blog post about asthma that he is doing his own analysis of reducing his inhaler and has noticed that the asthma medication is definitely affecting his skin.
I think there is definitely a connection. The body does not work independently. It is a complex and fascinating machine and we don’t understand any of this fully because little or no real research has been done.
I’m still worried about these OCS
So what are we to believe?
If, as the article eludes, these medications can cause osteoporosis in long term users, as a woman I want to find a safer way of treating asthma.
The article clearly states that OCS prescription is reducing for many other inflammatory conditions such as Lupus and Rheumatoid arthritis, but not for asthma. Why is that? And what is the alternative? If not OCS then what?
There isn’t anything else suggested so for the moment we must continue using them.
What natural solutions are there?
We’ll hear from Anja again, she has been recommended the following:
Non-steroid medication for asthma:
1. Montelukast – a tablet
2. Tilade – an inhaler
3. Intal – inhaler
Anja also saw a TV program where a GP and nutritionist looked at the diet of a patient with asthma and managed to significantly reduce their asthma by making specific shifts in her lifestyle and diet. This has nothing to do with TSW but it’s interesting as many of these with eczema and TSW also have asthma. We hope to provide you with more information on this programme.
Things I’ve tried to reduce my asthma naturally
- Exercise as much as I can. I do yoga, running and walking and pratice working on regulating my breathing when I do all of these.
- Meditation and Buteyko breathing – to help calm the body, reduce anxiety, encourage better, deeper breathing.
- Saline inhalers – I haven’t uses these myself but others have suggested they help them.
- Reducing the perfume, chemical and unnatural products in your life. I’ve slowly changed to all natural soap, skincare, washing products and now attempting cleaning products. I’ve even got rid of all the normal candles as these give of chemical fumes. Opt for beeswax or soya candles for a natural glow! And use natural essential oils to fragrance your home.
- Reducing allergens by hoovering regularly, reducing the amount of carpet, curtains and places for dust, regularly changing bedding, using a dehumidifier and air purifier.
- And so many other things
Why is my asthma clearing up?
I also have a confession to make. Over lockdown, and since I’ve got further through my TSW journey, my asthma has been getting better. With the advise of my asthma nurse I reduced the dose to one puff a day and saw no change. No deterioration. When I forgot to take the daily puff for a few weeks, lockdown fried my brain, I noticed I was still doing fine. I actually couldn’t find it so knew I’d not used it for some time.
I’ve also worked hard on eating a healthy diet, getting rid of anything that might trigger allergies in my home and going very eco and natural as much as I can. See the list above and there are so many more things.
I am also fitter and run and walk more and am doing regular yoga. All this helps.
Is this just a coincidence? Or is the fact that I’ve cut out topical steroids meaning I don’t need the oral ones? Could there be a link? Has anyone else noticed this?
I have almost forgotten about my inhalers. I do still carry the blue one around and use a precautionary puff before going for a run, but a rarely need the blue one, and now never use the preventative one. My asthma has almost gone.
I had a minor attack this week pulling up old tomato plants in my greenhouse. They were rotting, the stems brown and dead and all this kind of fungus puff came off them, like an airborne dust and that really made me wheeze. I know I’m allergic to mould, so I hot footed out of there, took my inhaler, sat down and concentrated on my deep breathing and it went away.
I really don’t want to open a can of worms here but what are these OCS doing to us long term? If you need them you must keep taking them but think about all the ways you can help support your body naturally.
Having experienced first hand the very real and very horrific damage caused by my internal organs withdrawing from Topical Steroids I’m very concerned.
But if we don’t have our steroid inhalers, what other treatments could people turn to? I know I could not have coped in the past when my asthma was very bad. I needed that preventative inhaler. It allowed me to lead a normal life and I most certainly could not have lived without it.
If you use one, please continue to do so and seek advice from you GP or asthma clinic if you have concerns.
But why has my asthma suddenly healed? Will it now come back and bite me? It’s just interesting and I’m fascinated to understand what’s going on in this rapidly healing and changing body.
We need more research, particularly into TSW and asthma but also just into natural ways of helping people with asthma live a better, safer live, free from asthma attacks.
“And finally, a new following who is going through TSW shared in a comment on another blog post about asthma that he is doing his own analysis of reducing his inhaler and has noticed that the asthma medication is definitely affecting his skin.”
Would you be able to tell us where to this other blog post? Is it on your website?
Hi Giovanni, I’m not sure who that other man is who is doing this, but I definitely noticed that it was affecting me. And vice versa, it works the other way. I’m sure there is a relationship between the topical steroids and the lungs and breathing. The longer I’m off the topical steroids, the better my breathing has got and I just realised one day I no longer needed asthma medication at all. I’m not at three years TSW and can’t remember the last time I used my blue inhaler in the day to day. I now moderate and control any wheezing and tightness of breath by using Buteyko breathing. I haven’t used my brown preventative inhaler since the March we went into lockdown. There is definitely a link, but since Asthma can be life threatening it’s a tricky one to experiment with. And since I’m not a doctor I can’t advise you what to do. Are you going through TSW yourself? And do you also have asthma? Let’s try to track him down! On another note, I have come across a woman who is using WimHoff hot and cold showers with very good effect also on her asthma and breathing. I’ll try to add the link to that blog if I haven’t already done so. Stay safe and keep healing.
Hi Ruth,
first of all, sorry about the confusing question. I meant to say “Would you be able to tell us where this other blog post is”…
To answer your questions… I started TSW in May 2020 when I was already asthmatic, although not officially diagnosed. I was using the preventer regularly after a bad bout of bronchitis the previous year. Anyway, TSW got so bad that I went on orals steroids and Methrotrexate in July 2020 for 6 months. I stopped MTX at Christmas 2020 – I never liked the idea of taking an immunosuppressant. During this period, I stopped using the preventer completely. I guess, my inflammation went completely away. In March 2021, my chest started getting worse again – probably inflammation returning – to the point I had to use the inhaler again. That sorted it, but at the beginning of last December (2021) I flared-up very badly. Not as bad as the original TSW, but not pleasant. Now, I’m wondering if this flare-up has been caused by the accumulation of steroids in my body. It’s impossible to know and I can’t really stop the inhaler. So, I’m playing the waiting game. The only alternative is taking Montelukast (Singulair), but I’m not very keen due to the clack box warning…
I might try the cold showers when my skin recovers. Right now, I can’t contemplate being touched by water! All in all a very frustrating situation!
I’m with you on the whole shower phobia, it sends me into paroxysms of itching at the moment but I might ease myself into this as I heal. So you’re trying to find other blogs I’ve written about asthma and TSW? There have been a few.. I’ll add links to the blog above so it’s easy to find them.
*black box warning…. sorry about that!
I hope I’ve now added links to my other blogs above. And please try Buteyko breathing as it helps me and works now as if I’ve had a puff of the blue one. I’m not even joking. It blew my mind.
https://whatallergy.com/2013/05/the-buteyko-breathing-technique-for-asthma/
thank you!
My pleasure. keep in touch.
Hi ,
Interesting read!
I have had a TSW that lasted a year , about three years ago ,
Then once I had got over the worst I was absolutely fine for about a year and a half,
then I’m November 2021 I started a large flare up that saw me having to use immune suppressants orally and lasted 7 months or so , I don’t like being on them so decreased and stopped them ,
I was then ok for 6 months or so and my skin was nice again …..
Fast forward to now and recently had another eczema flare that I’m struggling to keep at bay … the only thing I can think of is that this time each year I get bad breathing when the weather changes and suffer nasal drip causing a tight chest and so subconsciously reach for the old brown inhalers I’m meant to be living on for some kind of relief !!!
I’m now online searching this as a potential link and stumbled across this page ,,,,,Could this be the underlying catalyst!! I was prescribed a part preventative part relief inhaler that I started about a month ago at and guess what ,, it’s steroid ….. I am starting to think there is a link .
For reference I do have allergies and In the year and half that I was ok after the TSW my breathing was excellent and I cycled heavily without any need for even the blue inhaler ! Hmmmm
I’m convinced that there is a link. I am now nearly 4 years topical steroid free and also don’t need my inhaler most of the year. I’m trying to learn to nose breathe and stay off the steroid inhalers, tho my doctor says it won’t have an effect as it’s a tiny dose of steroids, I no longer believe much of what doctors say regarding inflammatory diseases. However I am still flaring more in the winter, I’m still going through TSW (used for over 40 years so may take me longer than most) so perhaps winter is just tougher. I don’t know. But I swear the more I read about steroid inhalers the more I suspect they are also doing more untold long-term damage that is not yet understood fully. There is a long-lasting reliever inhaler, well a few I think, but one called Serevent which my asthma nurse won’t let me have unless I go back onto the oral steroid preventer inhaler. Bur even whilst on the preventer, I would still get asthma if around my allergy triggers, so it doesn’t really help. This time of year I think it’s mould for me and i also get a wheeze when the weather changes, seasons and changers from wet to dry, hot to cold, like i’m some kind of barometer for the weather. I’ve been diving deep into natural asthma healing and making progress but winter is always a time when I’m a little more short of breath. Buteyko breathing and nose breathing exercises are helping a lot. The breathing techniques help me shift a lot of the phlegm naturally and I’m just working on trying to not go back on the preventative inhaler. I had to actually pay for a prescription for a brown one just to get the blue one, that’s how effed up our NHS is at forcing these drugs on people who have already been through so much without caring of the consequences. thanks so much for your comment and I wish you all the success with your TSW healing. And asthma… the more scary I guess. Check out this blog book review that i did https://whatallergy.com/2022/08/no-more-allergies-asthma-book-review/ and see if you can get some Xylitol nasal spray. you’ve reminded me to start doing this again, it really helped relieve symptoms for me last time I was wheezing.
Hi Ruth,
This post describes my situation perfectly. It took me 4 years of TSW since 2019, to realize that perhaps the immediate drop-off of using my daily asthma inhaler to never using it at all, was the catalyst of my TSW. This post certainly described my TSW story.
I took on cycling in 2018, which inevitably gave me sun exposure to my back more than ever before. Anja’s research certainly confirmed my theories as to why I was able to give up the inhaler. The big kicker however, was moving out of a home with a dog, which I was allergic to. It was then that I didn’t need to take my inhaler daily or at all for the first time in my life.
I was overjoyed of this stunning change, but the feeling was short-lived. Unfortunately, my body went through an immediate overreaction of TSW. Within 30 days without the inhaler and living in my new apartment, my upper body, eyes, and face, had all the worst symptoms. I did not know about TSW at the time and thought it was simple and pure eczema beating me up, but TSW is in a category of its own.
Currently I’ve been on immunosupressants after about 5 months into TSW. I would say it certainly helps clear things up by 60%, but I’m not looking forward to keeping this or any steroid around for the rest of my life. I do get flare-ups, but they were never as bad as the initial reaction. Recalling those first 5 months of TSW was going through hell and back. Everything about it was horrible, from literal 5 months of no sleep, the itching, bleeding, you name it.
I can’t believe it took me this long to find the link between my Asthma and TSW. However, I’m so happy you and Anja shined the light on this. It is rare that a lifelong asthma sufferer like myself all of a sudden loses their need for an inhaler, but this post should certainly help for those looking for confirmation.
It really worries me, did the topical steroids cause the need for the inhaler? Are we creating patients for life here with these truly horrible drugs that cause addition and are really really hard to withdraw from? Thanks so much for your comment. I too now have a blue inhaler for the odd asthma, usually from pollen and only on rare occasions. So good to hear this isn’t just me, and fascinating to see how TSW research plays out in the future as we learn more about it.