This has really been worrying me. If you have asthma then you’ll be familiar with those brown preventative inhalers and you’ll also know that they contain steroids.
That’s just what they contain, not much we can do about that, and they work! They help you keep your asthma under control.
But what if you are also cutting out topical steroids? Apologies to the asthma peeps who are not doing TSW, I hope there will be something of use for you guys here too, but keep your eyes peeled as I have another blog about living with asthma coming up shortly that will appeal to everyone with asthma and I hope everyone without too! It’s about reducing indoor pollution and everyone needs a bit of that.
So back to the steroids…
Will using your inhaler affect TSW?
The blue inhaler which helps with flare ups or asthma attacks doesn’t contain steroids so you’re fine using that. But as everyone with asthma knows, using the blue inhaler a lot isn’t good. If you need to puff on your inhaler daily and feel your breathing isn’t controlled, then you probably need a preventative inhaler.
These are the ones that contain steroids. Some are brown, mine orange. These need to be taken every day, either one or two puffs or whatever our doctor or asthma specialist advises.
Reducing the dose of oral steroids
Always use a spacer to take your preventative inhaler and also remember to gargle after each dose, and also brush your teeth. I did get thrush in my throat from using this during a bad spell of asthma and you don’t want that. It’s horrible. Using the spacer means the drug is held inside the central tube and you can breathe in slowly, rather than the drug being blasted at your tongue and the back of your mouth.
This is the steroid in my preventative inhaler that I use, pictured above, and it’s administered doses of 125 micrograms of active ingredient.
Looking at topical steroids, choosing Elocon as just one example, each gram contains 1 mg of mometasone furoate, the active steroid ingredient.
There are 1000 micrograms in 1 mg. So yes, it’s less but it’s not THAT much less. I hate steroids so much that I don’t want any of them in my body at all.
When I first started my TSW journey I tried to reduce my dose of preventative inhaler and at some point, when I was probalby at my worst, I started forgetting to take it.
I realised I hadn’t used the preventative inhaler for about six months during lockdown when an asthma nurse phoned to check I was OK, due to having asthma and self isolating. I couldn’t actually remember the last time I’d taken it and my asthma was the best it had ever been.
This wasn’t a conscious move on my part and I’ve always advised anyone with asthma to keep up with the preventative meds because asthma can kill. It’s a very serious condition when it gets out of hand.
So what had changed for me? Was it the reduced stress? Less pollution? Getting out for regular exercise? Working less? Sleeping more? Learning to breathe? Eating better? Cutting out processed foods? Drinking less alcohol?
A combination of all of these?
Or was it something more sinister. Was my asthma improving as my skin was healing. Was there a link with the topical steroids and my asthma?
But then came a flare up..
In the last few months I’ve noticed my asthma has been getting worse. I don’t know if it’s linked to hay fever and pollen, moulds or pollution increasing again. I don’t know if it’s the weather.
Anyone else get a mild increase in asthma EVERY TIME THE WEATHER CHANGES?
This can be really annoying when the British weather gets into it’s four seasons in one day nonsense, which I actually love by the way. I’m one of those true Brits who loves the weather, finds it fascinating and loves how the scenery, views, nature and woodlands change with the seasons, skies, weather etc.
But it plays havoc with my asthma.
Holidays and asthma
My asthma also often seems to flare up when I go away. I’m not sure why. Again, is it dust? damp? Excitement? I have no idea. But I was really wheezy in the lake district, which was frustrating. I also stayed at a friends house, who have a dog and I had one evening where I could hardly breathe. I could tell they were really worried too and their lovely if boisterous dog was banished to see if that helped.
I was there for a few days and it seemed to calm down after that awful first night. I didn’t seem to be allergic to Murphy’s saliva (we played gross slobbery ball games for a long time) or his fur. I seemed to be able to pet him and be near him and not be wheezy but then really struggled in certain rooms of the house, like the living room with soft furnishings and carpets. I was happier in the kitchen which was tiled. So I suspect it may be my dust allergy, which is so annoying. I don’t seem to react like this with my own dust just other peoples.
TSW flare up vs Asthma flare up
My skin has flared up in the last few months. Is this linked to my asthma also worsening? I started to take the preventative inhaler in the last few weeks and my skin is just getting worse and worse. Is there a link? I’ll be gutted if there is because I really need to get on top of my asthma.
Steroids in your inhaler are low dosage
When I spoke to my ashma nurse I expressed my concerns about using the steroid inhaler whilst trying ot do TSW and she did allay some of my fears.
I was told that inhaled steroids mostly remain very localised to your lungs, and that very little actually enters the blood stream leading to systemic effects. The dosage of steroid in inhalers is also extremely small compared to the amount in topical corticosteroid creams that we were being prescribed.
I’ve also been told that topical steroids are perfectly safe so I am still a little skeptical, because the problem is, these so called experts don’t know. They don’t know and they don’t see; they don’t accept that TSW is real so why should I believe them about inhaled steroids?
I am clinging to the hope that the steroids in my inhaler will not spiral me back to square one. I hope that I will and can keep healing. I have to remain hopeful.
I have to cling to the belief that I will heal.
I felt so close back in March and April. In May, June and July I had the most amazing taste of what living with normal skin will be like.
So for now, I will keep using my preventative inhaler. I also have an oxygen machine at home which I think is also helping so I will keep on with that, twice a day when I can find the time.
And I am clinging to the hope that we will all get through this. Stay safe asthma warriors. Asthma can be deadly so take your meds. Eczema and topical steroid withdrawal are just grim, not life threatening.
Learning to love yourself, to love your faulty misbehaving skin and to really believe that you are enough, is also part of this healing process.
I am beautiful. I am perfect just the way I am.
(But maybe not quite the way I am, I mean I’d be so much better without this eczema plague #amiright ???)
I am beautiful, and so are you. All you beautiflawed TSW warriors. Keep fighting. Keep smiling and keep using your inhalers!
Anyone else out there have asthma and going through TSW? What do you feel about this? I’d love to hear from you guys…
Andrew Williams says
You are beautiful.
The inhaled steroid dose IS small and hardly any of the one you are taking gets into the systemic bloodstream.
Asthma kills, 1500 people of all ages every year in the UK.
Not using Inhaled corticosteroids as prescribed (or poor care from your GP/asthma nurse) is one of the main causes of these unnecessary deaths.
It’s easy for me to say all that as I don’t have life changing eczema to consider but as you wisely point out, with due respect, “Eczema and topical steroid withdrawal are just grim, not life threatening”
My thoughts are with all of those who find themselves in circumstances of chronic illness. There are difficult decisions to be made, contradicting advice and long lonely hours. I remain in hope though for improvements …if there is the investment and passion to drive research forward. W|e also need to keep the NHS.
Ruth Holroyd says
Thanks Andrew, such kind and sensible words as always. We do need to keep the NHS. I love the NHS and everything they do. I guess going through TSW just makes me want to help guide changes to guidelines about the use of topical steroids. But it is good to know my asthma nurse gave me good advice. I’m using the medication as prescribed and my asthma is back under control Thank goodness. TSW will continue for a long while yet but my skin is soooo amazing compared to before and during. I am so thankful that i chose to try this.
Heather Stover says
I have had eczema forever…as a teen..bad around 19..and then on and off ..my arms or torso… a little cortisone would fix it up. Never had any face reactions. Asthma gets worse every year with the flu. So I started taking steroid inhaler regularly about 7yrs ago.
My eyes started swelling. For 7 years I have been battling (on n off) my face swelling and burning and itching.. including my throat sometimes. Arms neck back torso all act up in the winter as well. (Throw menapause in there too) Have been on prednisone at least twice a year since then. Cortisone ..elidel on my face.. even eyelids! Every docter tells me there is no way the inhaler would cause it. Every doctor gives cortisone cream.
Trying not to use creams now as I have been reading about tsw. Trying to stay away from prednisone.. on anti histamines.. antacid.. antidepressants to keep swelling down.. prescribed by an allergist. Seems to keep it all at a dull roar for now.. but not at a level I can function everyday.
Afraid of the inhaler that is helping me breathe
Ruth Holroyd says
I’m afraid too. I’m afraid of what these medications are doing to us. One thing I have noticed that might give you hope is that the longer I go without topical steroids, I’m now nearly 2 years into TSW (started Jan 2019) the less my asthma bothers me. It seems to be getting better the better. I still have triggers, like dust and cats but that’s an allergy. However the persistent, daily, endless tightness in my chest has gone. I don’t use the preventative one any more. I don’t need to. My peak flow is amazing and I just feel better every day. I still sometimes feel wheezy and I think this is allergies, air borne, moulds and dust etc. So we’ll see. The jury is out and I have a new blog coming soon that might just blow your mind and not in a good way. Everything they told us was wrong. Everything the gave us was bad. And we are left picking up the pieces
Almost a year into TSW, in a similar situation to yourself, and have came to the same conclusions outwith. My steroid inhaler certainly seems to be absorbed a lot more than they state in the lungs and flare up the TSW. Asthma has been really bad also, Recommenced a short treatment of the inhaled steroid: Seretide 250, Just a few days, then a few days upon stopping had a prolonged flare up. Going to test it agan. Have you discovered anything that can speed up healing? Anecdotally heard Calcium D-Glucarate and zink help, started them and seems to have definitely helped. Experimenting with water fasting too, it stimulates fibroblasts in the skin increasing its’s ability to heal, resets tons of systems and boosts stem cells and growth hormone. Autophagy kicks in too, figure will be a faster way of healing but not been able to find anything on it – you are probably more than aware of all this, just in case. Thanks for your article, So interesting and relevant, especially as all this craziness is going on with Covid. The Executive Editor of The British Medical Journal (BMJ) wrote a scathing article about the Government lying about the science, as many virologists/epidemiologists have been saying for a while. Denmark had a 9 day protest and managed to repeal a new legislation to reverse lockdowns. Not 100% verified that yet but fairly certain. So cool to find find this, thanks again. subscribed and look forward to reading your others!
Ruth Holroyd says
Hi Alex, so sorry to hear you are going through TSW too. I’m really not sure if anything speeds healing. I am now about 18 month into it and I’m still going through kind of mini flares and still see improvements all the time. Some people do heal quicker but the majority seem to take 2-3 years to be completely healed, but some longer. The first year was awful, the next six months were up and down with some brutal flares that seemed to get worse, but now I’m really finding life easier. The things I think helped me heal were taking about 4-5 months off work to heal, getting into the sun (good luck with that now in the UK hahah) but I also managed to get UBV light therapy for 4 months which I’m sure helped. I also eat a pretty clean diet, cut down on alcohol and became a hermit, slept when I could and exercised as much as I could. I think sweating is really good, if you can bear it, because I know it hurts and stings. it feels like acid. My asthma has been slowly improving but I’m monitoring that situation. You may also like my latest blog with an update the potential dangers of OCS, oral steroids. I have some more info to add to that so will sit and do that now so you go an read it with all the information you need. And as corny as this sounds, I had to learn to love myself and my skin, even while it was bad and healing. I did a lot of meditation, gratitude journaling and Yin yoga which is really amazing. It gets you into a place of acceptance of discomfort and I’ve found it really challenging. I’m still trying to do some Yin every week and more often if I can and run as much as I can to get my body sweating. I need to do a blog about all the things I did don’t I. Epsom salt baths have been a great help too. as well as using only all natural skincare and cleaning stuff where I can. So in a nutshell, I’m not sure if there is a faster way, it takes time. A lot of time but I guarantee it gets easier. You will get there. I’ll share some before and after photos in a TSW update post soon. If you are on instagram there are loads sharing their journeys and tips.
Ruth Holroyd says
You may also find this interesting, some thoughts shared from TSW recognising doctors https://whatallergy.com/2020/11/the-dangers-of-oral-corticosteroid-ocs-inhalers/
Thank you for this post. I’m about 5+ years TSW and my asthma felt like it was under control until it wasn’t and it slowly crept up on me these last few years especially the last 1.5 years of lockdown and working from home life.
It really hit my lungs when I went away on a work away day and then on leave to Greece where the climate (extreme heat), sun etc caused an asthma attack like I don’t remember in my recent adult life. Or I’d blocked out what the worst of asthma attacks felt like. A mucusy cough? That’s just a cold said my holiday brain!
When I got back home, and could barely keep the mucusy cough in whilst on the tube, I called the GP as an emergency when I could, and was told to take the brown inhaler (which I NEVER take!!!) I only very rarely took Ventolin. The TSW anxiety came flooding back but the choice to breathe and live hit me and I realised I was fortunate to not end up in hospital because of the inhaler.
I’m hoping to be better aware of my asthma and take better control of it again (I had other chronic conditions and this took a backseat, but also feel like the last year definitely took a toll on my lungs). I had a close call, and realised how life-threatening it can be, but also that it’s manageable.
Ruth Holroyd says
It’s such a tricky one. I’m so glad you are OK and now feeling calmer about your asthma. It can be really tough and take a big toll on your day to day life. It’s exhausting and as you say, can be life threatening to so you need to be on top of it and sensible. Weirdly since going TSW my asthma has almost gone! I’m wondering if there is some kind of connection. Do you take a peak flow? Keep on top of it and keep monitoring. And look into deep breathing techniques. Learning to really breathe properly, slow down my breathing and learn to calm myself has really helped me with my asthma I think.
I am going through TSW at age 55 for over 20 months now. Actually when it started I was given three rounds of prednisone within three months and also went thru Oral steroid withdrawal!!!! Insane torture. My asthma triggered about half a year into TSW- I was back on inhaled steroids which I think keep me flaring. I’m now 20 months in and my skin is still excruciatingly painful. I don’t sleep at night, can’t regulate my temperature, tremble from cold, feels like steam coming out and f my neck…..my inner elbows bleed…..behind my knees too…..Doctor after doctor knows nothing about this, All want to prescribe steroids!!!! Immune suppressant drugs …..there must be a better healing process.
Ruth Holroyd says
I hear you! I am currently sitting with a cloth around the back of my neck and between my boobs because it’s so inflamed, damp and oozying and hot, and yet the rest of my is shivering cold. I haven’t experienced anything as awful as this in my life. It’s truly barbaric. I’m struggling to sleep too. Just be kind to yourself. Grab sleep when you can. Be gentle in your healing. Don’t beat yourself up for not healing fast enough. None of knows how long this will take. I’m 2.5 years in and ages 48. Kind of resigned for the long haul. Just sitting here praying for a little bit of rest in the midst of all the fire and torture.