Allergies, Anaphylaxis, Eczema, Topical Steroid Withdrawal & Asthma

Topical Steroid Withdrawal FAQ

Topical Steroid Withdrawal - Frequently Asked Questions

Scroll down the page to find the following resources. I hope you can find some answers, some hope and information to help you go through TSW or if you are caring for someone, some pointers for further research.

These are the questions I get asked over and over again, and I want to help all the people who need some one to talk to but I can’t talk to everyone, I physically can’t at the moment. I’m still healing myself and need to take a step back sometimes because the tidal wave of people either going through TSW or facing it is truly terrifying. Stepping into the abyss with no support and no real medical supervision is probably crazy but so many of us are choosing to do it.

“Your site is the best resource on Topical Steroid Withdrawal that I’ve ever come across!“

Tabitha

Video coming soon!

If a patient asks you about TSW or is worried they have the condition, please don't gaslight them. Please listen and give them the time to explain their concerns, symptoms and what you can do to help.

Topical Steroid Withdrawal (TSW), also known as Topical Steroid Addiction (TSA) and Red Skin Syndrome(RSS)N, is a debilitating iatrogenic (full body) condition that can arise from the use of topical steroid creams to treat a skin problem such as eczema. For further reading, please research The International Topical Steroid Addiction Network which is a nonprofit charity formed to raise awareness about a condition called Red Skin Syndrome, also known as Topical Steroid Addiction or Topical Steroid Withdrawal Syndrome. https://www.itsan.org/ Also check  https://scratchthat.org.uk/ resources provided by a group of TSW survivors in the UK

Please watch these two documentaries showing TSW:

Preventable – saving our largest organ - https://youtu.be/RMbtf3C8BZk

Skin on Fire – Created by dermatologists https://youtu.be/GuaBbsL1qKA

Medical Studies into TSW

There have been a number of studies;

Recognised by Government bodies and charities

See the Gov.uk website here: https://www.gov.uk/drug-safety-update/topical-corticosteroids-information-on-the-risk-of-topical-steroid-withdrawal-reactions

National Eczema Society and British Association of Dermatologists issued joint guidance on TSW - https://eczema.org/wp-content/uploads/Topical-Steroid-Withdrawal-position-statement.pdf

Questions to ask your patient if you or they think they may have Topical or Protopic Withdrawal

  • When did they start using and how long for? Where on the body? amount used and frequency.
  • What happens when they try to wean off? How long till the skin rebounds?
  • What are the symptoms they experience? ( see below in FAQ for symptoms list)

If you are interested in doing no harm to your patients and finding out more, the following FAQs may also be of interest.

My dermatologist observed my journey and continues to do so but has so far not acknowledged that TSW is real. He refuses to put it on my records. He continues to encourage me to start using topical steroids again and also that Protopic would be fine for me to continue using. He has been helpful referring me for UVB therapy and patch tests but since I am refusing treatment now they would usually discharge me from the dermatology clinic. However they are willing to keep seeing me to observe my journey and see how I get on so I will be going for annual meetings. Hoping for some more patch tests soon since they only did a small amount since my skin was so sensitive.

I have created a handout for doctors and dermatologists and will continue to encourage them to read resources and learn what TSW is.

You can download the following my TSW Handout for Doctors.

Sample letter for GP and Dermatologist

It helped me explain what I was doing and why. It can be hard to talk about as they can often be very dismissive. It explains what TSW is, how the process of withdrawal works, symptoms and includes links to useful studies, videos and research.

It also includes information on doctors who recognise this condition.

I hope this document will be of use to some of you.

It can also help to keep a lot of your symptoms, mood, and take pictures of your skin flares to show your doctors, I found this really helped to show it at it's worst or best as you never know what your skin will be like when you have an appointment.

Topical steroid withdrawal is an iatrogenic (full body) skin condition that can develop when someone uses  topical  steroids to suppress a condition. Typically eczema or psoriasis can then become unmanageable, no longer respond to the topical steroids and the skin is addicted. Trying to cease use causes the whole body to erupt, ooze, over heat, nerve pain, crusting and excessive flaking, to name just a few symptoms. It can happen after using for weeks, months or long term use of years.  It can also happen after only using mild topical steroids.

The current official guidance states that topical steroid withdrawal can happen when:

  • people use potent steroids for too long
  • it is very rare
  • if use correctly topical steroids are safe

I would question all three statements as I've seen it happen in very short time and mild use. The time it can take to heal can vary from person to person and is not possible to predict.

If you think you may have TSW hopefully the following Q&A will help.

I would love to say seek advice from your doctor or dermatologist but you may find a lot of resistance and disbelief. Please use the resources below to help you communicate with your specialist and get any help that is available.

From the ITSAN website

Before discontinuing use:

  • Rebound’ redness between applications
  • Rashes spreading and developing in new areas of the body
  • Intense itching, burning, stinging
  • Failure to clear with usual course of treatment, requiring a higher potency topical steroid to achieve progressively less clearing.
  • Increased allergic response

After discontuning use and during TSW

  • Skin flushing bright red, resembling a sunburn
  • Visible and measurable flaking of skin – appears to be ‘snowing’
  • Oozing exudate
  • Skin cycling between oozing, swelling, burning, and flaking
  • Red sleeves: (arms/legs become red and inflamed, sparing palms/soles)
  • Thermoregulation altered (feeling too cold or too hot)
  • Hypersensitivity of the skin to water, movement, moisturizer, fabrics, temperature, etc.
  • Nerve pain, sometimes described as “sparklers” or “zingers”
  • Enlarged lymph nodes
  • Edema
  • Eye dryness and irritation
  • Skin atrophy (often manifesting as “elephant wrinkles“)
  • Hair loss: (head and/or body)
  • Insomnia and altered body clock
  • Appetite changes
  • Fatigue
  • Emotional fluctuations, depression, anxiety

In my opinion Protopic and Elidel, topical immuno suppressants prescribed as completely safe to use on the face, are anything but. I believe they can and do cause perhaps even a worse withdrawal. See What is TSW above for what to expect, just more of the same. Both topical steroids and Protopic and Elidel are immune suppressants.

Please read the following:

  • Year started using Topical Steroids: As a young child. Not sure what age but was born with eczema.
  • Frequency of use: Hard to remember, but all my life on and off with some periods of remission. Flares 4-5 times a year and rebound in early 20s and 30s and again in 40s. Used topical steroids for approx 45 years.
  • Stopped using Topical Steroids: 1st February 2019 (at the time Elocon)
  • Topical Steroids used: Hydrocortisone, Eumovate, Locoid, Betnovate and latterly Elocon. Betacap for scalp.
  • Years using Topical Immunosuppressants (Protopic): 5 years
  • Stopped using Protopic: April 2019
  • Time using Methotrexate: April 2019 to Sept 2019 - Did not really work for me and caused very bad outbreak of Shingles.
  • Stopped using paraffin based emollients: 1st September 2021

I believe Protopic is just as dangerous, if not more so than topical steroids and want to raise awareness of this. I used it for about 4-5 years and tapered my usage before going cold turkey. Here are some resources and blogs that I've written:

I can't prove this is the case as most people start on topical steroids and move on to Protopic, so arguably is it just TSW symptoms? However I know some people have withdrawal, the same symtoms after ONLY using Protopic so be very wary of using this. In my opinion it's not good for skin. Steer clear please. My face has been by far my worst affected area and that's where I used Protopic.

I never ever liked using them. Call me steroid phobic, but it seems all my inner fear, anxiety and reluctance to use these topical steroids wasn’t unfounded. I spent most of my life trusting doctors that steroids were my only option, that I ‘just had eczema’ and would always have to use them. But I never liked it. I always used them very sparingly, thank God! I never used them as directed and I think my healing has been kinder because of that. What made me decide to stop wasn’t just one thing, it was a gradual creeping feeling.

I also write a blog and shared my experience of the correct way to apply steroids and also about this new wonder drug I discovered called Protopic. And at that time, back some 7-8 years ago people began to tell me in comments on my blog that I should look into topical steroid withdrawal. I did and decided I definitely didn’t have that, nor could I ever go through that. I had to work. I couldn’t work like that and couldn’t take time off. I felt trapped so ignored these comments and decided I would just have to keep using topical steroids.

I then noticed my skin was becoming more and more reliant on these creams. I used to have maybe 3-4 flares a year where I’d need a few weeks of topical steroids to heal my skin. As I got older that changed. Instead of flares, I couldn’t stop using them. I was literally addicted, or my skin was. I also noticed that applying some to my hand would heal my feet. There was some kind of linked all body experience going on. So I started trying to wean myself off them, which was impossible. And the more I researched the more fear I felt at giving them up. I didn’t think I could do it. I wasn’t in a good place mentally, I had to work, it was just not going to happen. But as my life began to crumble. My marriage failed, I was living back with my mum, I was really struggling with panic attacks, anxiety, having therapy for my fears of dying from anaphylaxis, I began to realise how messed up my relationship with my skin was and how deep it went. One day I decided, I need to find a home, a safe place, I need to save up enough money and I will leave my job and just dive into this healing journey and see where it takes me. I do not regret it for a minute. On the 1st February 2019 I stopped using Topical steroids on my skin (at the time Elocon) and on 1st April 2019 I also gave up topical immuno suppressants (Protopic). I am 48 (2021) and used topical steroids all my life. I am still healing every day. This could be a long journey but I have a pretty good quality of life back now.

did taper off, for what seemed like years, getting to a month and being so bad I’d use them again. I do feel that it can only help to start reducing your use slowly but eventually you will have to take the plunge and go cold turkey to see if you will have a withdrawal reaction. Not everyone does.

I do know other people who tapered off topical steroids and they feel they’ve had a kinder journey as a result. No one really knows though. All this is such an unknown.

How to taper off topical steroids in a nutshell. Firstly make a note of your frequency of use an where on the body you apply it. You could try reducing to once a day if you apply twice a day for instance. Keep note of how your skin reacts and slowly stretch the time frames. If you can get to once a day, switch to missing a day in between.

Also look at the potency of steroid you are using and look at reducing that if you can.

Some people say this is pointless but it makes sense to me, to give the body a little warning and time to get used to reduced levels on the skin.

I also have a friend who had such an amazing journey and is clear of eczema and TSW within one year. I’ll see if she will share her story on here. Because not all of us will go into full TSW.

This guidance could be useful for you: How to safely withdraw from topical steroids.

I found that within a week my skin was deteriorating. By 2-3 weeks I was in a lot of pain and discomfort and by a month I’d try to use again. But I gradually pushed these boundaries and one day just decided it was enough. So I quit and here we are now!

I really do think this is possible. I kind of did it, but by the time I tried I’d been using if for over 7 years so I think the damage was done. However my sister had very different guidance to me. She was only using it for a short time on the stronger dose, until her skin was stable for 3-6 months, and then she began to taper off. She was using it twice a day at first. Then she switched down to once a day. Then gradually she go to a weekend boosting dose. I too manged to get this far but could never quite successfully wean further without drastic deterioration. However my sister then moved on to use the very low dose Protopic and continued to reduce her usage. She very rarely uses anything on her skin now and it is so clear and healthy looking. She still gets eczema flares from time to time but is able to manage this. I am hoping she and I can put together a full blog on this so she can share her story. I think it will bring hope to many.

I’m just sad that my dermatologist continues to tell me I should use it and that he’s happy for me to use it as often as I need to as there is no danger to my skin. With two such conflicting views from different experts it’s no wonder we are all so confused.

So with my sister’s experience to look at, I do think short term Protopic could help. However it is an immunosuppressant and is ultimately dampening down a response that we should be listening to and learning from.

For the first 3-4 months I worked full time, which became impossible as I was just so insanely itchy, inflamed and bandaged at my wrists and ankles. I left my job and took about 6 months off work. During that time I was writing my first book, The Reluctant Allergy Expert, which was actually something lovely to be distracted by. I was able to do about two hours writing each day, when I could. And when I was really bad I could do what I could from my bed. It was very hard at the start but you sort of get into a rhythm.

The worst symptoms for me were the zingers or nerve pain and lack of sleep. Everything is awful but the constant electric shocks up my arms and face were relentless and for what felt like a whole year, these kept me awake. And if it wasn’t zingers it was just restlessness, itching and the worst insomnia imaginable. It does get easier. From year two it started to improve and now, at 2.5 years I feel like I’m making up or lost time. I’m sleepy at 9.30pm and sleeping in till about 7am which is so much easier to deal with.

Working has been very hard. Concentrating while being itchy most of the day is a real challenge but I had to work. I live alone so I have to support myself. All I can say is, it gets easier and I’ve done a lot of soul searching and exploration and feel that I’m much kinder to myself as a result. When all you can manage is to eat something so you don’t starve to death, and nothing else, you realise how badly you’ve been treating and viewing your skin. I have now become a self care and self love pro! I highly recommend it.

Most of them to be fair, including:

  • The TSW flare which goes from inflammation, oozing, then crusting and drying and excessive shedding
  • Sometimes it just sheds, very dry skin all over my body so that you need to hoover up skin flakes every day
  • Insomnia
  • Zingers – nerve pain – these were worst in year one, waking me all night long.
  • Insane, bone deep, constant itching
  • Hair loss, receding hair line and eyebrows completely fell out
  • Loss of skin pigmentation and also darkening of the skin in some areas
  • Elephant skin, thickening of the skin
  • No ability for skin to sweat (first 6 months)
  • Excessive sweating now as skin learns how to adjust
  • Swollen lymph nodes
  • Anxiety about going out, talking about my skin, being seen
  • Energy levels low, exhausted all the time
  • Scared of everything, moisturising, not moisturising, washing, not washing, sleeping, not sleeping, never getting better,
  • Gradual improvement of skin and then a slide back to worse skin. Backwards and forwards. Healing is not linear.

No Moisture Treatment (NMT) and Moisturiser Withdrawal (MW) are two very different things.

NMT means you limit your water intake drastically, don't shower or wash and do not moisturise. There are strict guidelines to follow and it is mostly useful for people who experience a lot of oozing. If you are not oozing this may not be required or advisable.

MW means you limit how much you moisturise, from the strict no moisturiser to slowly reducing and seeing what your skin can do without. I'm trying to do this one, and finding that as I heal my skin can last longer and is OK without any moisturiser, or certainly it isn't helping.

Many swear that you can heal quicker on the NMT regime but it's not easy. My reasoning for NOT doing NMT were as follows:

  • Infection - I'm terrified of infection so wanted to keep clean. I found dead seat salt, epsom salts, colloidal oat baths and cider vinegar and tea tree baths kept my skin infection free throughout my TSW journey.
  • Hydration - I think dry skin needs hydration so I have continued to keep drinking plenty of water and herbal teams to help my skin heal.
  • Pain - I just find that sometimes my skin is so sore, and emollients can help soothe, help skin be more flexible, help me sleep and reduce itch. We are all different but I find I'm way more itchy when my skin is dry.
  • This is hard enough already - I've chosen the path of most comfort so just doing what my body is telling me is right. Follow your intuition and gut.

So please note, I'm not a doctor.  I did my own research and chose my own path.

I have moisturised throughout my TSW journey. Many people swear by No Moisture Treatment (NMT) and Moisturiser Withdrawal (MW) because apparently we become addicted to moisturiser too, which apparently makes the skin worse. I’m not sure about this, I just don’t believe that moisturiser can be that bad.

I won’t cover NMT here as I didn’t really succeed at doing it. However if you think you’d like to try it, check out the resources section below and visit Scratch That and ITSAN. You could also read this blog by Louise King – NMT: No Moisture Treatment – NMT is where bathing, water intake are reduced and no moisturiser on the skin. MW or Moisture Withdrawal is less aggressive and is more related to just reducing moisturising. You can do this on just part of you body, so choose one area to experiment with. Going all in at the start can be too intense for some people. I have tried this and am slowly reducing the moisturiser I use.

You may also want to read Moisture Withdrawal here.

I decided that because I needed to work and wanted to make my TSW journey as comfy as possible, I have used moisturiser when I needed to. Some days my skin doesn’t need it, some days it does. I am using less and less as I heal and I do think I’m still healing.

I have used the following:

        • EPADERM OINTMENT 1000g{1KG} – I have now weaned myself off this because it’s paraffin based and I wanted to give my skin only what's natural going forwards. However I used this heavily in years 1 and 2 of withdrawal. It didn't' irritate and I think brought me a lot of comfort on what has been a very difficult journey. Sometimes it was the only thing I could trust to use. I was scared to use anything else. I think because I’ve used it for so long, it doesn’t irritate me and I can trust it. I also used it as a skin cleaner when I couldn’t use any soap. I would apply it to skin before bathing or showering.
        • Balmonds – Skin Salvation, Lavender Baby Balm, bath and body oil, and Tea Tree balm. These have been amazingly helpful. Now I'm not using Epaderm I use this a lot. Use code: WHATALLERGY for 20% off.
        • Lyonsleaf – Zinc and Calendula cream is just so soothing. I think it helps calm my skin and reduce itch. I use this on my face mostly. I loved this when my skin is oozy too, the zinc in it would help dry out the ooze. It also helps on really stiff, stuck on crust as it gently softens the crust. I put it on like a face mask and let it soak in. They also do a marshmallow emollient which is great for backs of knees, elbow crease and all over body moisturising. Use my code WA20 for 20% off.
        • Cetraben – works OK on my skin. At the moment it’s too dry and needs more of an emollient. But it’s good on my legs and arms.
        • Caurnie Soaperie – Nettle cream – great on hands, arms and legs. They also a beautiful lovely bar soap that I’m loving for washing my hands. A lot of soaps are very drying and irritate my skin. I find liquid soaps to be very bad and also wasteful.

I am using minimal moisturisers now as I heal but there are some products that I love and I use them for different things.

  • Balmonds tea tree balm and skin salvation - On stubborn patches that won't heal, look inflamed and are really itchy
  • Lyonsleaf zinc and calendula cream and the marshmallow balm - I use this on my face and neck, also underarms and I think it really helps soak up sweating. The zinc cream was amazing on ooozing skin and also on really crusty flake crusted skin - it softened the crust and allowed the flakes to come off naturally faster. I also use this on my face, neck and between my boobs where it's still problematic.
  • BNatural
  • Hyalauronic serum
  • PURA Collagen

Personally I chose not to, I never really wore much makeup even before going through TSW as my eczema always left my eyes irritated and watering and it usually left my skin worse, sore and dry and irritated.  However I know many of you do want to wear makeup so here are a few more natural brands you could try.

Ruth - Laura Mercier makeover

  • NAT Origin - On the odd occasion that I do wear makeup I have their eye liner and mascara.
  • Laura Mercier - It's not cheap but I had a photoshoot in 2019 in my first year of TSW and swore I would not have any makeup on, my face was so raw, red and sore. However the girls there put me at ease, coaxed me gently, helped me cool down and this makeup felt amazing.  It didn't irritate my skin at all. It didn't last long as I had a flake off on the way home but temporarily I felt amazing!
  • Odylique - especially created for people with sensitive skin. If you shop with them you can get 10% off when you sign up to our newsletter. Free delivery on orders over £35 and Earn four points for every £1 spent.
  • Bare Minerals - One of my favourites - Mineral makeup can be much kinder to the skin.
  • English Mineral makeup company - I've not tried this brand but it looks good and has lots of awards.
  • Greenpeople - Organic makeup range.
  • Nude by nature - 100% natural ingredients
  • Nailsinc - plant based nail polish

The image here is the result of the Laura Mercier makeup - I felt amazing so if you had to go for a night out and wanted to get glammed up, this stuff wouldn't set you back healing wise.

Please also visit The Free From Skincare Awards for hundreds of natural, organic skincare products that may be more suitable for your skin. Go to the Problem Skin Category for sensitive skin suitable products.

Ruth - Laura Mercier makeover

Skin healthy tips:

    • Get in tune with your skin – So basically I’d say, do what feels right. You will find you tune into your skin. Sometimes you won’t need to put on any moisturiser, other days you might find it helps. Some days you’ll find you don’t feel able to shower and bathe and some days you will. Notice what happens to your skin and you’ll find you can listen to what it needs.

 

    • Check ingredients – Do look at the ingredients of anything you put on your skin. I only put natural, organic products on my skin. If you don’t know what the ingredients are, should they be safe on your skin?

 

    • Patch Test – Always patch test any new skincare products and ask for sample pots so you don’t buy anything that you will have to waste of pass on.

 

    • Hydrate – drink plenty of water and herbal teas. Limit coffee to one cup a day and drink alcohol in moderation. I didn’t completely cut out the booze and found that the odd blow out gave me much needed relief, laughter with friends and actually helped me sleep and helped me have at least a night of less skin focused fun.

 

    • You are what you eat – Try a food diary even just for a few weeks. It would be crazy not to investigate this if it could save you eczema flares.

 

    • Cut out processed foods – My skin is awful if I eat anything processed. I do let a few things through this net, if the ingredients list is short and I know what the ingredients all are, I’ll eat it. Buy carefully and your skin should improve.

 

    • Natural skincare – Be careful what you put on your skin! Not all skincare products that claim goodness are natural and healthy for our skin. Do you research, shop ethically, locally and only put things on your skin that you could eat!

 

    • Mental health is key – if you hate your skin, and stay angry at what’s happening you’re in for a rough ride. I know this is so hard, but if you can find acceptance and then find a way to give yourself the love and self care you need, your mood will improve.

 

    • Reduce stress and anxiety – So important!

 

    • Eco your house – Remove all toxins, fake perfumes, candles, mould, dust, clutter, toxic cleaning products, off gassing furniture and paint. Go clean, shop around, ask questions and be inquisitive about everything you bring into your house.

 

    • Don't analyse each flare? - This is possibly the most important piece of advice I can give you.  TSW is random and not linear so you have ups and downs and these probably have no bearing on anything at all. They are just cycles of healing and you need to go through this to heal. It's perfectly normal during TSW and will continue to cycle to varying degrees throughout your healing journey. Each flare, or healing crisis, is one step closer to being through this.

 

    • You are not alone - Hold onto the hope, others have healed before so keep strong and know you are not alone.

 

My scalp was pretty bad and just covered in thick crusty flakes so I found less hair washing was better. I now wash my hair once or twice a week. I leave it as long as I can to allow my scalp to continue to heal and it’s so much better now.

I do have some favourites at the moment:

  1. Olsson sensitive shampoo – Use code WHATALLERGY10 at checkout for 10% off at checkout.
  2. Kind2me bar shampoo – Always looking for an eco solution, this has no plastic and comes in a cardboard box. Leaves my skin feeling silky smooth and is very gentle on my scalp. Use Promo Code WHATALLERGY for 15% off

So I basically wear my hair up most of the time when it’s a bit greasy and wash it when I need to, or when I’ve been running. That tends to be about twice at week at the moment.

I always wash my hair leaning over the bath to avoid shampoo going on the skin on the rest of my body. However I think both of these are gentle enough to use in the shower. I will be trying showers again soon… bit of an itch trigger for me so I tend to have a bath instead.

Eyebrows - Yes these completely fell out, but remember, they will grow back. I'm not sure why our hair falls out, whether from constant rubbing and itching, or just part of TSW. Don't stress it, talk to them, tell them you love them (your eyebrows) and that they can come back now LOL

have tried to eat a simple diet, reduced my meat intake and am already avoiding dairy, wheat, soya and nuts due to allergies. Too much meat can just put extra pressure on your digestive system but I did not totally avoid meat. I stuck to fish, turkey and chicken.

I found The Eczema Detox cookbook very helpful. It’s the first book where I’ve seen TSW mentioned! It offers nutritional guidance and loads of recipes. I have a lot of firm favourites from there that I do often now.

I have tried to reduce my sugar intake and opt for natural sugars such as dates, honey, maple syrup and coconut palm sugar instead of processed sugar.

Also check out The Itchy Dozen – 12 foods that can make you itchy.

Avoid processed foods where you can, I find these make me itchy and can cause an eczema flare.

When I can I cook fresh, locally sourced meals but often, during TSW it’s hard to find the energy or inspiration. On days when you can, do batch cooking, freeze and use when you can’t face cooking.

If you think food is a problem, check out my free Food, Mood and Symptoms Diary. Please download this and use it. I hope it helps. Do seek advice from a medical professional. I am not a doctor, but keeping a detailed diary for a week or two could really help pinpoint trouble foods.

Yes. Yes I did. I tried to cut it out and in fact didn’t drink for months and months. Then I noticed that when I did have a drink it didn’t appear to have any adverse affect. When there is so much going on with the skin anyway it’s hard to know what’s causing what or if it’s just completely unrelated. However I did stick to certain rules. I only drank organic and vegan wines. I found Prosecco and Champagne to be OK and also gin and vodka. I’m also partial to real ale and have a few favourites and this was also OK for my skin. Obviously a full blown hangover isn’t great but don’t beat yourself up. So what if you have a drink. Just try to keep it in moderation and I found the enjoyment of having a glass of wine helped me, it’s been along old year with Covid and TSW! The no drinking alone rule kind of got lifted when I was just so alone sometimes it hurt. I didn’t realise how much I needed time with friends until I couldn’t see them any more.

I avoided cider and anything too sugary or artificial but just do what feels right. I know many who have cut out the alcohol and found it helped. I did at the beginning but as I’ve healed it’s not causing me a problem.

I do however need to stress, I don't drink much these days. I don't drink midweek and avoid drinking alone, but if I go out to celebrate or spend time with friends I'll have a drink.

Some drinks are also probably better than others, e.g. cider and wine a high on sugar. Something like gin and tonic is possibly safe.

Honestly, I think it’s made my contact allergies better. I’m talking about hay fever, dust allergies, things like that. My asthma has all but disappeared since stopping the use of topical steroids. However I have done lots of work to rid my house of any triggers and allergens. They certainly didn’t get worse.

You will find your skin appears to be very sensitive, it will break down and this could mean allergens can get into the skin more easily. But I kind of got to the point where I stopped looking for causes for each flare.

The cycles go round and round regardless of what you do. Sometimes it feels like you are reacting to everything bit I honestly think you can’t be too strict or obsessive during TSW. Once skin starts to heal more it will be easier to spot triggers. And as skin strengthens you should be less reactive.

I did get lots of hives, which you might connect with allergies but the seem to be quite random and more connected to getting hot, being stressed and irritation or clothes rubbing on my skin.

I do have anaphylaxis to dairy, wheat, soya and nuts and this will remain the case for the rest of my life. I would never experiment or try eating any of these foods as the reaction is so severe I end up unconscious in A&E.

Please read - Natural treatments for allergic asthma

I’m not sure supplements really help skin. There are plenty of studies that suggest that the body is not able to readily absorb capsule and pill forms of vitamins and minerals. However I did still take some, feeling that throwing at much as I could at my skin and body couldn’t do any harm. Here’s a list of what I took and am still taking. I cycle and stop sometimes to give my body a break, but these are the things I return to often and take on a regular basis.

  • Dr Morses Adrenal tonic – Available from the Juice Retreat
  • Dr Morse Tinctures – Dandelion and Burdock, Milkthistle, Nettle leaf, Astragulus  - From the Natural Dispensary
  • Alfalfa supplements (for calcium) – (also from the Natural Dispensary
  • Vitamin D3 - get a good quality source
  • Omega 3 and 6 fish oils, flax seed, borage oils and Evening primrose oil capsules. (rotate and switch each time I finish one)
  • Magnesium - I use Floradix liquid magnesium (I found this on Amazon and it comes in a bottle)
  • Skin and Burn Tea (Dr Morse)  From the Juice Retreat

Gosh this one is so hard, they can be so painful and heart breaking, especially after a period of better skin.

All I can say, and you're going to hate me, is that it gets easier. It really does. It can also get harder, it's not linear and can be a roller coaster, but there is no short cut, I think the skin needs to go through these healing cycles to heal.

Try to see each cycle as one step closer to healing. Remember it's not eczema, this is not your fault, and you will get better in time. Be kind to yourself, take it easy and learn self care and self love, it will get you through.

You may find - How do you cope with an eczema flare up useful.

It can be really hard to do any exercise, let alone running as sweat can be agony, but it's possible and the act of sweating can be really helpful to healing.

If you look up Dr Sato, one of the few dermatologist treating TSW skin, he advocates moving as part of your healing so it's really worth trying to start, even if it's just with walking at the beginning.

Read How running helps heal my TSW skin

If you start trying to incorporate running and fast walking into your healing day, you'll also love, 30 ways to cool your TSW or eczema skin.

If you love reading, Iron Skin by Brendan John Lee tells his memoir of healing his TSW skin and he attributes running regularly as vital to his healing. He used Dr Sato's NMT method of healing and one of Dr Sato's key pieces of advice is to run regularly or at least get as active as you can. I think it's really key to understanding how we heal - something about running, the sweating and the sheer feat of doing it that totally distracts us from the itch.

Running is hard work, I won't lie. It can lead to over heating after a run but by being prepared with cooling towels, fans etc. you can get through this. For me the benefits far outweigh the risks of scratching a bit.

The lack of sleep can be so utterly exhausting. Some nights I wouldn't sleep AT ALL, and then after what seemed like days I'd have a blissful deep sleep for about 12 hours and then back to insomnia. It's so hard to function, work and keep on top of everything.

At the moment I'm taking a glycerine supplement, melatonin and Valerian tincture before bed and trying to get back into a sleep routine. It's definitely getting easier and I feel more rested in the morning and can wake up a more normal time. Again, it does get easier.

You may find the following helpful:

The most important thing is not to stress about it. The more you try to sleep the less likely you will be to get good sleep. Let it go, know it will be OK and grab sleep while you can.

I found that I would finally fall asleep at about 6am so le me myself sleep until 10am. I find I can lie in like a teenager so when I don't need to work, at weekends, I don't set an alarm and just let the sleep come, I sleep better in the morning.

Hang in there! You will sleep again, but do ask your doctor for sleeping tablets if you are really struggling. We need to sleep to heal so it's frustrating when we can't.

There is no right or wrong answer to this one. Everyone is different and it doesn't seem to make any sense. It can take months or years but the average time, according to TSW expert dermatologist Dr Marvin Rappaport is 3-5 years.

Try not to second guess, don't put times on healing targets. Just let it play out as it will. You will heal.

I’ve pulled together the best resources I can find for you guys to help you research this complex and fascinating condition.

  • ITSAN – The only charity for Topical Steroid Withdrawal – ITSAN – Support for a global community living with Eczema and TSWS – Here you will find loads of resources, medical studies and information to help you work out whether you do in fact have TSW or not.
  • Scratch That – Scratch That – Topical Steroid Withdrawal awareness & information – A UK group of TSW people, some recovered, some going through it now. Packed with resources, tips and information.
  • TSW Assist -  provides crowd-sourced recommendations for managing topical steroid withdrawal.
  • Cara Ward’s blog – Cara has been through TSW and now has normal skin. Her journey has been so helpful for me to follow. She has also written a book, Curing my Incurable Eczema which I highly recommend. Cara Ward (tswcara.blogspot.com) – This also includes an exhaustive list of other blogs, websites and resources for TSW.
  • Jem’s TSW blog – sharing his story to discovering TSW and starting to heal his skin – Jem Brown’s TSW blog.
  • Sashibot's blog - Sasha looks at NMT, Nitric oxide and her No Foods list for TSW as well as lots of research resources. She is collating a study into people healed from TSW so please get in touch if you consider yourself healed. https://www.sashibot.com/
  • Instagram - So many people are sharing their journey, tips and advice. It's well worth getting stuck in and learning from others in a kind and supportive community.
  • Facebook groups - There are loads of these. I don't really use them as I rarely use Facebook but I know many find help and support from these groups so worth exploring.

If you’re a reader like me you’ll find these invaluable.

The Shape of Skin - poetry for eczema

Curing my Incurable Eczema by Cara Ward – Cara’s journey through TSW. Click the title to find it on Amazon.

This is not Eczema by Claire Oxenham – An illustrated guide to Topical Steroid Withdrawal and what to expect. Click the title to find it on Amazon.

The Shape of Skin by Ruth Holroyd – A collection of poetry for people with eczema and topical steroid withdrawal. Click the title to find it on Amazon.

The peculiar disappearance of Jillian Sanchez by Kelly Toews – Written by fellow TSW warrior, is a story of loss, of pitching into the unknown, of darkness and light and healing. This is currently available on Amazon in Canada.

Iron Skin by Brendan John Lee - a memoir of living through Topical Steroid Withdrawal

There are a number of short films, documentaries and YouTube resources available now.

Listening to music can be really healing, find the songs that resonate, the words that make you feel seen, and sing them at the top of your voice, dance too if you can. I've been doing this and it can really make me connect, cry and really helps let out some of the pent up emotion.

Click here to download the TSW Smash Playlist from Spotify

TSW Playlist – Available on Spotify

Despite lectures to dermatologists and papers published in the most prestigious Dermatology journals, the mainstream medical community will not accept the concept that it is their medical therapy that causes and promotes Red Skin Syndrome. Instead, they continue to mislabel the disorder and insist that “chronic eczema” is an incurable condition. I am determined through my blog, the media, and the numerous cured patients to take this concept into mainstream thinking.”

Dr Marvin Rappaport

Visit https://red-skin-syndrome.com/ to make an appointment with the only doctor who really understands Topical Steroid Withdrawal. Cost $600 approx.

I know it must be heart breaking  watching someone go through this... i know from speaking to my own friendas and family, they just feel helpless and don't know what to do to help.

The following blogs may help:

But if I can tell you ONE thing, it's to NEVER EVER EVER tell them to stop scratching. They can't. The itch is bone deep. and despite how bad you think it looks, saying that is like punishing someone who is already in torment and blaming themselves. None of this is their fault, so just be kind and find another way to engage, help or distract them.

I've found loads so if you like reading up about TSW you have lots of bedtime reading:

  1. ‘Steroid Addiction’, International Journal of Dermatology, 1979, Albert Kligman and Peter Fosch
  2. Corticosteroid addiction and withdrawal in the atopic: the red burning skin syndrome, Clinics in Dermatology, 2003
  3. Serum nitric oxide levels in red patients – separating corticosteroid -addicted patients from those with chronic eczema’, Jama Dermatology, 2004
  4. Prevalence of atopic diseases and the use of topical corticosteroids – is there a connection?’, Medical Hypotheses, 2005
  5. ‘Adverse effects of topical glucocorticosteroids’, Journal of the American Academy of Dermatology, 2006, Ulrich Henngge, Thomas Ruzicka, Robert Schwartz, Michael Cork
  6. The red skin syndromes: corticosteroid addiction and withdrawal’, Expert Review of Dermatology, 2006, Marvin and Vicki Rapaport
  7. Topical corticosteroid-induced rosacea-like dermatitis: A clinical study of 110 cases’, Indian Journal of Dermatology, 2011.
  8. ‘Side effects of topical steroids’ – a long overdue visit, Indian Dermatology Online Journal, 2014, Arijit Coondoo, Meghna Fiske, Shyam Verma, Koushik Lahin
  9. Topical steroid addiction in atopic dermatitis’, Drug, Healthcare and Patient Safety, 2014
  10. A systematic review of topical corticosteroid withdrawal in patients with atopic dermatitis and other dermatoses’, American Academy of Dermatology, 2015
  11. Topical steroid addiction and withdrawal – An overview for GPs’, Australian Family Physician, Ear, Nose and Throat, 2016
  12. Steroid Withdrawal Effects Following Long-term Topical Corticosteroid Use’, Dermatitis, 2018
  13. Topical Steroid Withdrawal: A Case Series of 10 Children. 2019
  14. Traditional Chinese medicine for food allergy and eczema. 2020
  15. Topical corticosteroid withdrawal (‘steroid addiction’): an update of a systematic review. 2021
  16. Steroid Phobia: Is There a Basis? A Review of Topical Steroid Safety, Addiction and Withdrawal. 2021
  17. Topical corticosteroid withdrawal reactions. 2021
  18. Topical steroid withdrawal through the lens of social media. 2022

Read Topical steroid withdrawal studies for further studies, links and resources.

MORE COMING SOON I PROMISE – if you have questions please get in touch on my email ruth at whatallergy dot com and I’ll do my best to add to the FAQ.

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