When I started my Topical Steroid Withdrawal journey back in June 2013, there were only a handful of blogs and videos to do with TSW out there and even fewer stories of people who had actually recovered from topical steroid addiction. There were others too who just vanished from the internet, deleted their videos and blogs and as a result, made me have approximately one million breakdowns that I'd never get better and TSW was just some giant John Grisham-style conspiracy in which we were all being systemically wiped off the face of the earth. I always knew I was in this for the long haul but DOUBT AND FEAR ARE THE WORST SYMPTOMS OF TSW.
When I started this series I contacted those who inspired me and I knew if I could I would love to interview Nina who to me is pretty much a skin HERO. I saw her videos of her suffering, just as I was, then watched on amazed when she made a full recovery. With that being said, you can imagine how excited I was when she agreed to take part but asked if she could send me her full eczema and topical steroid withdrawal story instead which I could do with as I wished. After reading it, I was absolutely blown away and it felt to me like an absolute sin to break it up into five chunks for answers when it was already perfect as it is. I did ask if she could still give me the five words that sum up her TSW experience and she told me they are 'Absolute hell, but worth it.' I have included some of her before and after photos below that are just incredible.I don't think I'll ever be able to put into words how grateful I am to Nina and the small group of people that kept me going through the hardest period of my life. I'm not going to get gushy or anything ... but thankyouthankyouthankyou *cries a waterfall of happy tears* <3
*Nina's story*
I have always had eczema. Since being a baby. My parents tell me stories of how they used to have to wrap my little hands and feet in coal tar bandages when I was really small just to try and give me some relief - to this day, the smell of coal tar is awfully familiar to me even though I don't remember this part of my eczema life.
As I got a little older, steroids came into the picture. I remember always having a tiny tube of Betnovate ointment at home and my mum would use it on super bad patches of my skin that needed it. I remember a specific time when I was 8 years old and I must have been having a flare on my back - my mum had to keep me off school (something she NEVER did unless I was really poorly) so she could lather my back in my prescribed emollients, followed by that awful greasy Betnovate ointment.
Ah, the emollients - I was ALWAYS being prescribed 'moisturisers' by the doctor, always. I remember having massive pump bottles full of Diprobase, then when that wasn't enough for my skin I was given Unguentum M - a much thicker, greasier cream. I used this for the longest time as my emollient. I still remember the smell of it and the texture of it - greasy against my skin and my clothes. Never ever being able to bathe without my precious tub of cream. Swimming lessons with school, holidays in the sun, trips away with the Girl Guides were all completely centred around my skin and my tubs of cream - every single time it rained outside I wouldn't dare venture out of the house in case my skin got a little damp and started with the awful itching that came from nowhere. Scratching myself to distraction, always being told 'don't scratch sweetheart, rub it' by my parents and my grandparents.
I would break out in the most awful hives any time a dog hair touched my skin, any time the rain touched my skin, whenever I sat in the grass on a lovely summers day. I remember my first awful bout of hives, we were on a family trip to Gloucestershire and I think the family we were visiting had a dog, a dog hair must have got onto my skin and MY GOODNESS I had never experienced itching like that until then - along came the antihistamine medicine. An awful tasting liquid that I would have to take any time there was a chance that these awful, itchy white blotches would appear.
I always remember having eczema on my hands and wrists. It was particularly bad when I was going through puberty -hello lots of Betnovate ointment- and when I was at university. I was always ashamed of my hands, throughout my whole childhood I wouldn't show them to anyone, why would people want to see my 80 year old hands?! All scabby and red?! I carried on using the Betnovate ointment as sparingly as I could, being careful never to put it on my face (my mum always told me 'never put it on your face sweetheart, it will thin your skin'). Early to mid twenties - still using the Betnovate sparingly to control my incessantly itchy, red, flakey hands.
*A little about me. I have always been an active person and exercise has always been my passion. I remember doing aerobics in my living room with my mum when I was five and it was so much fun. From the age of 14 I would regularly attend aerobics classes with my mum. It has been my dream since my early teens to become a fitness instructor and work with other people to better their fitness and lifestyle*
At age 26 I went through a massive life change which was extremely stressful - this caused a massive flare of the eczema on my hands. The Betnovate could no longer control it so out came the bandages and a trip to the doctors meant a stronger steroid cream was prescribed along with a thicker, greasier emollient (50/50 cream). I used the steroid and the emollient and wrapped my wrists in the bandages to try and stop myself from scratching - the itch was insane. The eczema started to spread, further up my arms - more steroids were used. It carried on spreading, onto my chest, my stomach, my back, my legs, my feet - to areas I had NEVER HAD ECZEMA.
*At age 26, I met Kelly. I moved in with her and started training in the gym with her - my body shape completely changed and I was super happy with the way I looked for the first time in my life. During this time, I was still teaching pole fitness classes and I also gained my Zumba instructor license. I was finally starting to do the things I had always dreamed of doing, I could soon start teaching my own classes! I started working closely with my favourite fitness instructor, a lady whose classes I used to attend regularly throughout my teenage years. She mentored me until I was ready to teach on my own, and I took over 6 classes per week as she moved to Spain*
Back to the doctors I went, a stronger steroid (Clobetasol - the most potent topical steroid available) was prescribed, along with a different emollient (Dermol - that awful stuff in the green packaging). Off I went with my precious prescriptions and the instructions to lather myself in the Clobetasol, let it sink in for half an hour, then apply my emollient. Surely this was the end now, this stuff was the magic potion that was going to make me better, and for a while, it did. As long as I followed the doctors instructions and piled on this steroid cream my skin was lovely and white for a while, then it would go red and itchy and flakey, until the next time I applied the cream - and that process continued for around a year. By this point, my whole body was going through these awful cycles of hell, completely dependent on the steroid cream. (I remember asking my partner to apply the creams to my back (because I couldn't reach) and I would watch her vigorously washing her hands afterwards to remove the steroid from her skin).
*I remember carrying a tube of Clobetasol in my gym kit bag and I would apply before each class I was teaching so I could feel confident that I wouldn't start itching*
At this point I was having to take time off my day job because my skin was so sore and I had no idea what was happening. I was put on courses of antibiotics because the doctors thought my skin was infected - they did nothing to help. I was referred to the dermatologist at my local hospital who gave me patch tests (those awful patches that cover the whole of your upper back and you have to leave them on there for THREE DAYS whilst they drive you mad) that came back inconclusive - if I wasn't allergic to anything, then what the hell was causing this?! I tried light therapy, it did absolutely nothing.
I have the most vivid memory of the moment I realised what was happening to my body. I sat at my desk at work, scratching and peeling my skin and I googled 'effects of using steroid creams thinning skin' and there it was, on my screen right in front of me. A video of Kelly Palace and Dr Rappaport talking about 'Topical Steroid Addiction' and 'Topical Steroid Withdrawal'. I took my phone into the toilets and sat in the cubicle watching the video that ultimately changed (and saved) my life. I cried in utter relief right there and then in that toilet cubicle, on my own, with my skin falling off. I read over the posts in the Google forum and read all about ITSAN, read the checklist of symptoms that point to TSA and TSW - I had every. single. symptom.
OK - So now what?? After reading all of these posts and watching these videos, all I had to do was stop using the steroids - ok ok, I can do that. I called my dad and told him what I had discovered. The most supportive man in my life told me 'Nina my duck, it makes complete sense, do it...' From that moment I have never touched another steroid. Firstly, I told my mum and my partner Kelly about what I was about to embark upon (what WE were about to embark upon). I knew that with the support of my parents and Kelly that I could get through this. After everything I had read on the forum I knew it was going to be awful, and long, and unpredictable. What I also knew though, was that at the end of this horrid journey I would have white skin, smooth skin, itch free skin - these are things that an eczema person's dreams are made of.
So off I went into the darkest time of my life. The months that would follow were the worst I have ever had and I could never have been prepared for what was about to happen. Here is a list of the things that happened to my body:
1. Redness- My skin went so red that I looked like I had been sat in the midday sun for a full day without any sun protection.
2. Swelling- My whole body swelled up to around twice its normal size. My legs were so swollen I couldn't walk and I couldn't stand up straight.
3. Itching- I had never experienced an itch so intense. Imagine, you know those little insect bites that you get that itch like absolute crazy - yes, that feeling, across your whole body, at the same time, with no escape from it. I would go into a trance when I was scratching because it felt SO good **Please please please don't tell a person with TSA/TSW to stop scratching, its impossible.**
4. Shedding- My skin would shed constantly, I would wake up in the mornings and my bed would be FULL of skin.
5. Hair loss- All of the hairs on my arms and legs fell out, my eyebrows fell out, my nose hairs fell out and I lost my sense of smell.
6. Ooozing- My skin would ooze a really weird smelling yellow liquid- it wasn't infected, it was just oozing and wet.
7. Nail infections- I was scratching so much that skin would get trapped under my nail beds and cause painful infections underneath my nails. This happened so often that popping the infected blisters and getting rid of the infection became part of my daily, hellish routine.
8. Soreness- All of the creases in my body became sore and cracked open. I couldn't straighten my fingers, I couldn't stand up straight, I couldn't smile because my lips would crack open.
9. Lack of sleep- I literally couldn't sleep at all. I ended up using sleeping meds from my doctor.
9. Eczema herpecticum- Towards the end of my withdrawal I got this herpes like infection across the white areas of my body. It looks like little volcano type lumps with a scabby head and it spreads like WILDFIRE. Antivirals are needed ASAP if you suspect you or your loved one has it. My doctors sent me away THREE TIMES telling me it was nothing to worry about - I had to consult the members of the TSW Facebook group, go back to my doctor and tell them exactly what I wanted. Needless to say they gave me the antivirals without question, my herpecticum cleared.
My skin would go through cycles of being hellish red itchy and oozy, and then would go into a shed. I moisturised throughout the whole of my withdrawal and would alternate between the following:
1. Coconut oil (YOU NEED THIS IN YOUR LIFE)
2. Castor Oil
3. Vaseline (a thin layer)
I would use the following things in my bath:
1. Dead Sea salts
2. Oats in a sock (squeeze out the lovely milk)
3. Coconut Oil
4. Aveeno Colloidal bath (a baby product, I used this as my skin was becoming stronger towards the end of my withdrawal)
I took the following medications:
1. Antihistamines (Loratadine, Cetirizine and Atarax)
2. Trazodone (a hypnotic sleeping pill - without this I literally could not sleep)
3. Aciclovir (this is the antiviral that I took for eczema herpecticum)
As I was going through the process of Topical Steroid Withdrawal I realised that making myself comfortable was THE MOST important thing. I had to get cover for the classes I loved teaching, I had to put my dream on hold for a while. I remember turning up to teach Zumba, standing on stage with legs so swollen I could barely move and a mouth that I couldn't open properly to instruct. I was heartbroken.
I would spend hours and hours in a scorching hot bath drinking cold water. I drank water straight from my tap. I ate lots of lovely tasting sugary foods and I didn't cut out anything from my diet - in fact, when I was withdrawing my diet was totally unhealthy compared to my usual healthy, clean way of eating. I lived in my bath tub.
During my withdrawal process we went on a holiday to Egypt. The whole ordeal was horrendous for both myself and Kelly but we did it. We came home, ready to settle into our bizarre routine with this skin condition ruling our lives - then we had a house fire. Thankfully the fire was confined to our utility room and we were fine, but our washing machine and tumble dryer were completely ruined- not good for a person who is changing their PJ's four times a day and soaking everything they wear with blood, ooze and thick greasy oils. Mum to the rescue again. As well as nursing me constantly and driving 26 miles a day just to sit next to me in the bathroom - my mum then became chief clothes washer and washing basket carrier. We often joke that she 'had a wash basket strapped to her arse'. We laugh - but it's the truth!
As well as that, Kelly was having to work full time (Kelly's full time hours at that point were 16 hours a day), sort out the house that had been smoke damaged, look after me, look after two dogs, and look after herself. I don't know how she did it but she did. She even put up with my ridiculous demand to travel to Norfolk to see her parents at Christmas - this was ludicrous because they had just moved into a new house with no bath tub. They organised it so that we could go to their old house and use the bath whilst I was there but it wasn't easy and I was so demanding of Kelly. I should have just let her have a rest but the thought of her leaving my side was just too much.
I have some videos on YouTube, please watch them as they will explain everything (here). I talk about my experience as it was actually happening. The experience of TSW is so traumatic that I can't remember certain parts of what happened and how it felt, I just know that it was awful. I couldn't have done it without the support of my immediate family and my partner (now wife) Kelly. It's because of these incredible people that I was able to stop working, stop leaving my bath tub and just focus completely on myself and my skin and just heal. I will be eternally grateful for the support I was so freely given during that awful time. What I will say though is that every hellish second, was so so worth it.
**As I began to feel my skin getting stronger (you just 'know' when its happening) I started going to the gym again. Gentle workouts to begin with and I would always have a change of clothes in my bag so that I could get changed straight after I had finished as my sweat would make me itch. I could start teaching classes again, just the odd one here and there and I would go along whilst other instructors were teaching. I was soon back to my regular routine with my day job and my Zumba classes. It was at this point that I set myself a goal. I wanted to stand on a stage, in a bikini, covered in tan, and show off my new skin**
I healed in March 2013 and my life hasn't been the same. I am no longer ruled by my skin, I no longer need endless prescriptions from my doctor. I don't itch, I don't shed, I don't ooze or come up in hives. I can just live inside this beautiful, smooth, white skin that goes brown in the sun and only goes red when I exercise and get hot. I can use whatever moisturisers I want, whatever wash powders I want, I can wear perfume, wear makeup. My full time job now - I am a sports massage therapist and Zumba instructor. Thats right - I MASSAGE OTHER PEOPLE for a living without having to worry about what products they might have used on their skin. I have two dogs and I can roll around on the floor with them and I DON'T ITCH! I can go out for a run in the rain and enjoy the cooling, refreshing water hitting my skin as I run and I don't have to panic. I can go on journeys without worrying about whether or not I have a pot of cream to hand. All of this being said though - I don't take my skin for granted. I still use natural products on it, my massage oil is -you guessed it- coconut oil, I eat a clean and healthy diet and I exercise every day. I am back at Crossfit and I am back on the pole. I use a good quality sunscreen in the sun and don't sit out for too long. In November 2014 I hit my goal - I stood on a bodybuilding stage in a sparkly bikini, tanned up to the eyeballs, face full of make up, and I loved every second. My mum, dad, Kelly and my best friend Sarah were all in the crowd cheering me on. I treasure the relationships I have with those who helped drag me out of the darkness because they will never know what they did for me, I can't put it into words.
To watch her inspiring videos (that helped me so much through my own withdrawal), click here.
Thank you so much Nina <3
Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Gosh, I love our community!
Cara xxxx
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