Topical Steroid Withdrawal - My Story
Updated: Jan 30
This is my topical steroid withdrawal story. Here I will attempt to convey the series of events that threw me, kicking and screaming, down the path that would lead me to where I am today. Not just living but thriving.
This story could start in the doctor’s office; covered in red patches of scales with a feeling of despair in my chest as my doctor says the words “ I’d like to increase your topical steroid potency and start you on prednisone”. This story could start in the playground at school ,scratching my legs raw underneath my thick school tights, knowing I would pay for it later when I’d have to rip the tights off my skin where they’d stuck with ooze to the fabric. But realistically, it starts in the hospital with a new-born baby. ME!
I was born via C-section and had an anaphylactic allergic reaction to cow’s milk days afterwards. This, I believe, and research would suggest, was the catalyst that sparked a childhood of poor gut health and a poor immune system. From those first few days, I started to develop eczema on my face and body. There are many pictures of me as an infant with horrendously raw cheeks. My mum would cover me in emollient creams, tubular bandages and occasionally topical steroids creams (Eumovate) although this was rare. I was very allergic and reactive to environmental factors as a child as well as being mildly asthmatic. I couldn’t go near a single animal because they would cause a flare, streaming eyes and very laboured breathing for hours afterwards. Not great for someone obsessed with dogs and horses from a very young age with pet rabbits and guinea pigs.
Every winter would be a mix of reacting to central heating, cold air making my chest tight, lots of layers making my skin itchy and hot and inevitable cold sores. Summer was spent covered in heat rash, long sleepless nights of scratching and staying out of the sun because my skin was so sensitive. Family holidays abroad would bring on a flare of some kind due to dust in the holiday home or again ,the heat. I regularly had infections, suffering from Impetigo twice on my legs. I’d have to be pushed in a pram despite being around 8 years old as walking would open up the wounds and you can imagine how much of a nightmare school was when I was embarrassed by the bandages I had to wear. Unfortunately, these infections brought antibiotics along with them, further breaking down my gut microbiome and immune system. I’m painting a great picture, right? I’m sure there are many people nodding along having experienced a similar story. Don’t worry, things improve.
This was the theme for most of my childhood. Thankfully, and you’ll be relieved to hear, my teenage years brought some relief. Hooray! Teens have enough on their plates. It seemed I had “grown out” of my severe allergies and eczema although certain environmental factors like dust would still induce a flare up. At the age of 19, I moved out of my family home while at the same time securing a job at a farm park. Almost instantly, my eczema came back, mostly on my legs and arms. The next 2-3 years were a whirlwind of changing jobs, all of which revolved around animals as I just couldn’t let go of love for them. This was the time I started to use steroid creams every day and they became a necessity to get through life. The cream I was prescribed was Betnovate. I used this every day on my body and face but it quickly lost its affect and my skin stopped responding. It got to the stage where I was covered in red, burning discoid eczema. I had to quit my job at the Orthopaedic Veterinary Clinic I was working at (The Supervet anyone? I was a surgical auxiliary nurse!) and finally wave goodbye to working with animals.
Over this time, I saw dermatologists and GPs who eventually gave me Fucidin, a steroid-antibiotic mix. This cream is intended for ten days of use but they failed to enlighten me to this fact and so I used it for over 365 days. It certainly gave me some relief when I applied it in the mornings however, the very next morning the weeping, raw skin would be back with vengeance. The next step according to the dermatologist was to give me prednisone, a potent oral steroid. I wholeheartedly did not want to take it and so there I was with a decision to make. After refusing the prednisone, my doctor shook her head with a bit of a smile on her face and told me that I would be on steroids for life and there was no other way to manage my eczema. I told the doctor I’d have to think about it and rushed out of the office. I was stuck in limbo and feeling hopeless but I knew of someone who had mentioned topical steroid withdrawal to me and had actually gone through it herself. Once I’d told her about my experience at the doctors, she pointed me in the direction of the ITSAN website and explained to me what could be going on. The International Topical Steroid Awareness Network (ITSAN) is a fantastic resource for those interested in TSW and what it involves. Just a word of warning, the first time you read about TSW, its absolutely terrifying. BUT all of those testimonies they have on the website have a happy ending, as does this one you’re reading right now.
So here we are….the beginning (without sounding too dramatic). Its 2016, I’m 22 years old with a new job as a merchandising assistant at Snow and Rock and staring straight down the middle of a future revolving around steroid creams and what my eczema ridden body will restrict me from doing. My only options it seemed were to continue to fall down the vortex in front of me or to take an equally scary plunge and give up the steroid creams. Life had to change. Knowing that other people had gone through TSW gave me the encouragement to put those creams in the bin. I went through TSW from October 2016 until ~around~ April 2018.
Now, I’m going to describe some of the symptoms I experienced during that time. Its less of a clear timeline and more of a.….splodge and there was no one thing that helped me get better. I kept an Instagram account (called Moodyfoodyitchbitch, lol) during all of it which helped massively with keeping track of how I was feeling, how my skin was looking but most importantly developing a support system around me of people who knew exactly how I was feeling. The first 6 months were the hardest. It was during these months that my symptoms changed every day, mostly for the worse and I was feeling more and more removed from my own body. Physically, I was experiencing hugely swollen lymph nodes, red blotches covering my whole body, a constant yellow crust/ ooze on my face and nipples that I now think was a staph infection, a raw neck, fluctuating body temperature from boiling hot and sweating to shivering and shaking, wrinkled and swollen skin (known as elephant skin) on my arms and neck, insomnia, hair loss, weight loss, sinus problems, my periods stopped, my whole body ached and my skin was producing a horrendous smell (it comes from sebum and is your skin trying to heal itself).
The psychological problems are equally immense. Fatigue, panic, mood swings, lack of ANY self-esteem, hopelessness, anxiety, and depression. TSW is a horrible journey. It rips apart everything that you thought you were. Your skin, your mind and the things that make you, you and it leaves you feeling raw. You have to blindly trust that your body knows how to put you back together again. It does, and it will, it just forgot how to take care of you for a while. TSW has the ability to make you feel unworthy of human contact, as though you disgust everyone around you and it makes you loath yourself. Every waking moment is exhausting and there’s hardly any rest because of that dang insomnia.
I don’t regret any of it.
It was raw, exhausting, shocking, immense, and brave. It was worth every moment to stop my body’s addiction to topical hydrocortisones.
In terms of products I was using, I was trying everything from natural balms to anti-fungal washes and all the different diets and supplements. Yes, I tried E45 and coconut oil. I never once touched immunosuppressants or steroids again. I was adamant I didn’t want anything from the doctor. At around 4 months in however, the infection on my face was becoming too much. I was still attempting to go to work during all of this and the embarrassment and self-consciousness I felt was crippling me. Most of my workday was spent crying in the toilets. This was a new job where not many people even knew my name and now even less of them were willing to talk to me. I was taking sick days weekly and they ultimately told me to either get a doctor’s letter, get better or leave. I had to keep working if I wanted to afford my rent (and food...) so I headed to the out-of-hours doctors office one cold February evening. She prescribed me three forms of antibiotics and tried to give me steroids on top of that but respected my refusal. I was given Fucidin topical antibiotic cream (the version without steroids) with instructions to apply this four times a day. The oral antibiotic prescribed was Clarithromycin, one tablet every 12 hours and the third form of antibiotic was Bactroban, a nasal antibiotic ointment to clear any staph infection lurking up my nose. That was to be applied twice a day. As much as I wanted to be done with medications, it was a relief to have this arsenal in my bathroom cabinet. By month 5, the staph infection on my face had cleared.
Things remained much the same for my skin over the next year or so. It developed an ooze-crust-flake-shed cycle on my face that went on for months and months. The improvement could be seen however it was painfully slow and each time my skin started to ooze for another cycle, it would make me feel as though I was back at square one. My body seemed to plateau in a state which looked like the kind of eczema I had suffered with for most of my life and it dawned on me that this might just be how my skin will be for life, like my doctor had told me. At the year mark, I moved back in with my mum after the break down of the relationship I was in. It was now that I started to see some real improvements in my skin. I’m not saying there was causation but there certainly was a correlation between now being back home, feeling safe and looked after and the fact that I was seeing these improvements.
My environment was now clean (thanks mum! Let’s be honest I wasn’t doing any cleaning in my last home during TSW). I was sleeping a lot better being back in my old bed. I was worrying less about other people and concentrating on myself plus I wasn’t drinking as much alcohol – which certainly had made things worse before, oops. All these factors amounted to my skin progressively improving. My face was oozing less and less and the yellow crust that formed could be easily washed off and wouldn’t return as quickly. I’d found some products that were working for me; I will list them below, and I was even able to be around my family dog without reacting. I experimented with sharing a horse and found that although I initially reacted, it was manageable and easily better than what I had previously experienced. My skin continued to get better until it was completely clear around March 2018. My face would flare if I wore make up or had a few alcoholic drinks but apart from that I had the best skin I’d had possibly ever in my life.
I now consider myself to be fully healed and the most eczema I’ve suffered with since that point has been a rash on my ribs twice. That’s it. I no longer have to worry about horse riding and have loaned a horse since then whom I rode almost every day for over a year. I now have the freedom to go for hikes and not have to worry about sweat stinging myself, the heat making me rashy or the sun burning me. I tan and freckle very easily, a phenomenon for someone who’s always been told they have “delicate, sensitive skin”. My allergies are non-existent. I don’t react to dust, pollen, hay or animals nor do I suffer any asthmatic symptoms. Could the steroids have been making these things worse all along? Part of me definitely thinks so and I’ll be writing about what topical steroids actually do soon, as well as how they affect your physiology.
In terms of things that I found helped me, here’s my personal list;
· Cleaning my face with diluted apple cider vinegar – It stinks but it’s a natural anti-bacterial and I found it helped to dry the ooze on my face I was experiencing without being painful.
· Taking baths in Milton – Milton is a disinfectant used to sterilize baby bottles and items but it’s also great at keep away infections on your skin and also helping to get rid of that horrible sebum smell. Just be wary that baths can be painful. There will be tears.
· Childs Farm baby moisturiser – I was able to use this towards the end, after about the year mark once my face had calmed down and was mostly just dry and flaking with no more ooze. Its simple ingredients were great for my newly healing skin.
· Antibiotic creams – They really did help clear up my staph infection and help me recognise the face in the mirror again. I used them purely for the clearly instructed time which was about 7 days and didn’t need to use them again after that stint.
· Medihoney cream – Unfortunately the brand I used isn’t available anymore, but I used a medical grade honey cream on my face in the beginning that seemed to help soothe my skin nicely and create a barrier that the ooze had more trouble coming through. However it was sticky!
· Colloidal Oat Cream – I live by my colloidal oats and still use the same brand of cream now as I did then, Aproderm Colloidal oat cream. I used in on my body and at the time was the only cream I could use that didn’t sting or make my skin itchy or come out in hives. Nowadays I can use any cream but am still loyal to this one.
· Sllleeeeeeeeppp – everyone loves sleep, but none crave it more than those suffering from insomnia. Thankfully my insomnia got better within a couple of months of giving up steroids and I started to find that the more sleep I had, the clearer and less itchy my skin was in the morning. Getting into a good sleeping schedule helped hugely – this is related to adrenal function, and I’ll be covering this topic too! Taking a couple of anti-histamines before sleeping really helped me nod off. Before I started TSW, I was on sleeping tablets as my insomnia was as bad a ½ an hours sleep at night and I was going cray cray. Luckily I didn’t have to take them for long!
· PEACE OF MIND – Focussing on my mental health, finding moments of calm and mindfulness in each day helped to reconnect me with my body that I had spent years hating and feeling betrayed by. Do it in whatever for suits you, it is important.
· A clean environment – having good room hygiene, getting rid of environmental triggers like dust and general mess will make not only your mind feel clearer but will eliminate any potential triggers for your skin.
· Connecting with people - Connecting with others through Instagram was a big relief for those moments of anxiety and also using Instagram as a photo diary was a great way to track my healing and share experiences with fellow TSW warriors.
Fast forward to 2023 and I’m sitting on my sofa with my dog in a flat that I share with my long-term partner. I have a relationship with my body that can withstand any test. I don’t worry about cracked hands in winter or the occasional itchy patch because I know I have the right products that work for me. I’m in my final year of studying for a degree that I wouldn’t have started if I hadn’t gone down the natural healing route and I want to work with eczema/ allergy/ TSW sufferers in the future by becoming an Allergy specialist dietitian. My experience was invaluable. I have a ferocious kind of self-confidence now that was never there before. I have the same Instagram account, just with a different handle (link top of page) but all the old pictures are still there if you scroll down far enough. My highlight reel is also filled with details about every aspect of TSW I went through. And so, for now I shall finish this long post by taking a page from Brene brown and quoting Theodore Roosevelt; “Courage is not having the strength to go on, it is going on when you don’t have the strength”.
You’re not falling apart; you’re falling into a stronger version of yourself. The comeback is going to be stronger than the setback. You were never created to live depressed, defeated, guilty, condemned, ashamed or unworthy. You were created to be victorious.
