Tapering- May 2014 to March 2015

Warning.. Gross skin pics to follow

I stopped Elocon (potent) and dropped down to Eumovate (moderate) the dermatologist advised using protopic (immunosuppressant cream, not steroid but just as nasty) twice weekly to prevent flare ups. I was covered in full body burning rashes. I couldn’t moisturise as they burned and made me itch more. I was crazy itchy… like something crawling under your skin. The only relief was the shower. I started using protopic on my forehead as I was getting rashes here too now.

These pictures are from the months I tapered down.

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when I first found out about TSA, 8 days after applying elocon

tapering rashes. So unlike eczema

tapering rashes. So unlike eczema

getting redder for christmas

getting redder for christmas

I was starting to struggle at work and the horse. My body would burn and I would just think about getting home and in the shower.

I managed this way thinking I could just ‘pop’ elocon on again for the wedding and honeymoon.

My social life dwindled as I found I wanted to do less and couldn’t do some of the things I used to do. I lost 1/3 of my hair, my lymph nodes were huge. I couldn’t control my body temperature. I would shiver then sweat and sometimes do both at the same time.

Covered in rashes I went to see my dress. The beautiful gown I had saved up for. I cried the whole time.

I saw a different derm and begged for help to clear me up for my wedding, she was a bit shocked by the state of my skin, and diagnosed me with severe extensive eczema. Not all doctors and especially not all dermatologists recognise TSW. I started light therapy. I tried 1 course of prednisone. It worked for 6 days, by day 7 it had spread to my face. The rebound after it was like being lit on fire. I stopped protopic for the light therapy and my face looked like sh*t. Sooo ready to be a bride (not)

We went to Amsterdam for Ian’s mum’s birthday. Beautiful city, got to love the Dutch, lovely people, and no, I didn’t see goldmember although I could relate to his problem with skin flakes.goldmember

Although my skin troubles had been discussed it was different for the family to see it. I was not the same person. I looked at the floor rather than at people, ashamed of my face and swollen eyes. I used to be the first one up to dance now I was the one first to bed. I hated hotel beds embarrassed by the ooze blood and skin on the nice white sheets. I hated travelling and felt like people were staring at my skin or wondering if my scratching was contagious.

my nose shows my normal colour

my nose shows my normal colour

red sleeve on face

red sleeve on face

red sleeves, clear palms

red sleeves, clear palms

zombie foot... nope its mine

zombie foot… nope its mine

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elephant hand

Together with our families, we made the decision to postpone the wedding for a few years, the rebound was too strong, I couldn’t be fixed for the wedding. I was dreading it due to my skin rather than looking forward to it. I was becoming depressed.

I have been amazed at the support from my family, friends and work colleagues. With the wedding cancelled for now. I have stopped working, started methotrexate, and started cold turkey withdrawal. I am terrified of bad this thing could get, as a long term user of potent stuff I’m fairly sure this is going to be hell. Probably will try some full body pics if you guys can stomach them for  when I get my ‘hell boy on’ for cold turkey withdrawal

Why ‘Buffalo Alex’?

buffalo bill

Since my skin is now a grey, leathery, scabby covering for my body that doesn’t really resemble skin. I can’t help feeling jealous of well, everyone. They don’t even realise how amazing it is to be able to sit there comfortably. Not itching. Not oozing. Not shedding. Not burning.

I was looking at Ian’s skin. How it is all one colour, skin coloured and smooth, soft and supple, he doesn’t even moisturise or do anything with it! Yet there it is doing what it should…keeping his insides in and the outsides out. I told him how amazing it was. He joked I was sounding like Silence of the lambs.

Ian said ‘get off Buffalo Bill, I’m worried you might go crazy from this and try and wear my skin.’

‘Say are you about a size 14?’

‘It puts the lotion on the skin’

Ha great I sound like a serial killer.

There is the truth of it guys… skin shouldn’t need anything. One day I hope to have a new skin without having to ‘Buffalo Bill’ anyone else.

Hello world!

Disclaimer…. I am not a doctor, I cannot diagnose or treat skin conditions. For medical advice please see your GP.

A run down of my life and skin story so far..

I started with eczema as a baby, my mum describes me having a ‘scabby head’ on the day a photographer was coming round, she applied some baby lotion which burnt my head which led to the first trip to the doctor, apparently baby lotion..yep… not intended for babies. I remember it affecting my hands and feet backs of my knees and elbows as a child, typical kiddie eczema. I had the wonderful trio of asthma and hay fever too. I remember wearing socks on my hands for bed with coal tar cream, and using a lot of moisturiser and emollients. It was around this time my eczema was first treated with cortisone creams prescribed by the doctor. Magically the eczema would clear up… for a while … and then come back. .. apply cream… clear up… come back…each time a little worse.. with an ever-growing cycle of treatment with increasing potency of steroid creams.

Most people know that eczema requires a genetic predisposition, it is then triggered by environmental triggers or allergies, or foods you may be intolerant to. The majority of children are lucky enough to grow out of it, but I never did (hmmm, how interesting.. more on this later).

Growing up I lived with my mum and dad in Halifax, West Yorks, but spent the school holidays at my grandparents’ house in Seghill, Northumberland. My mum is awesome, if a bit unconventional. She says she was never very good at remembering to put steroid creams on me so my skin was always a bit worse during the school months (maybe deep down she knew the creams were not actually very good for you) during the school  holidays my grandparents looked after me. My Gran would diligently apply the creams all over, sometimes like moisturiser (as she thought this was the right thing to do) My skin would clear up quickly, but the eczema would always come back.

My skin improved when we drastically changed my diet, and started natural remedies, I couldn’t take part in swimming with the other kids or eat the same food as they did. I remember my mum and dad having to set alarms twice throughout the night to give me royal jelly and other treatments. My weight dropped drastically and it was easier to return to steroid cream to lead a more normal life. (Ha, if only we had known) I graduated from betnovate cream to elocon and was told I would need these creams for life. I was always itchy and told to ‘stop scratching’

I remember the eczema spreading to my face around age 11 I think, by high school if affected most of my body and face, my hands and feet the most. I was bullied in high school, I was always ashamed of my skin. Things got better around age 18, I thought I had grown out of my eczema a bit. Thankfully my eczema did not rule my life throughout my 20s. I went to university and got my degree in dentistry. I made some amazing friends, went travelling, had an amazing social life and looked… normal. I worked a bar job where my uniform was a bikini and a life modelling job where there, erm, was no uniform! I could wear fake tan and whatever clothes I wanted, I didn’t need to moisturise all the time, I was quite a body confident woman. This was as close to normal as I had ever been. I just needed to make sure I took my tube of elocon cream and applied it to any rashes that popped up. It was still the palms of my hands that were most affected.

My mum and dad moved to France when I went off to university to make sure I didn’t come back (joking). I was able to spend the university holidays at their house in Normandy where my mum still kept my pony Ranger for me. One summer I ran out of elocon cream. I was covered in a full torso rash that burned and itched (not like my childhood eczema rash), I assumed at first it was heat rash. I went back to university, saw the doctor, got more cream and I was back to ‘normality’. Elocon was on repeat prescription in 100g tubes.

I met Ian in 2006 on a drunken night out and I started working as a dentist in 2008, I bought my new horse Cheddock in 2009  life was good.

It was about 3 years ago I noticed my skin was getting THIN. There was extensive atrophy and I would bruise at the slightest knock. Every time I had a jumping lesson I would have dark bruises up the inside of my calves. If I knocked my hands the same thing would happen. We figured out this was due to the steroid cream. I noticed that I always had a greyish tone to my thin, translucent looking skin, not healthy at all. Stretch marks blossomed down both my inner thighs and they were a deep burgundy colour. I tried to limit my usage of Elocon to small dabs once a week. I got bad dandruff on my scalp too and ended up using betamethasone on my scalp (another lovely steroid… great). I was worried where I was headed… skin wise… how much thinner could it get? What would happen when I grew old as I already had saggy wrinkled old lady skin? I felt trapped. I would have 2 clear skin days a week then itchy burning rashes would pop up on my hips and stomach and legs. Luckily my face was spared. I felt annoyed by my body, Why was it like this? Why couldn’t I be normal? What was going to happen if I couldn’t use these creams?

Ian popped the question in 2013, yey, I was getting married! We started planning our day. I even chose my dress. I was so excited. My ‘eczema’ was still at the back of my mind. I tried to google other things to try to help clear it up for the big day.

Then I found something astonishing….

S*IT…I DIDN’T HAVE ECZEMA…. I HAD STEROID INDUCED ECZEMA…

Also known as red skin syndrome or topical steroid addiction.

I found http://www.itsan.org/ and a host of papers and information on this iatrogenic condition. I found blogs of people who looked just like me with the same crappy skin…. It wasn’t my body to blame… It was the cortisone creams! I had been treating steroid induced eczema with the very thing causing it!

Ian looked at the information and so did my parents and we all realised that it had always been this. I didn’t need to be this way. I had hope.

My ‘eczema’ had probably burnt out in child hood after all. I read Dr Fukaya’s blog which explains everything really well. Watched Dr Rapaport’s videos and every bit of information I could find on blogs that other ‘red skin warriors’ had written

The answer to my problems?

STOP STEROIDS

I went through a lot of emotions. Anger at the doctors for never having told me this, sadness and feeling sorry for myself, and fear. The withdrawal from steroids is horrendous. Many people are house bound, bed bound or live in the bath.

I planned to taper down steroids until after the wedding in July 2015. When I would stop cold turkey.

Plans don’t always go to plan.