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.
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.