This is the history, as far as I can remember it, of how I came to the point of eczemacism. My memory is a little fuzzy about when, what and for how long etc, but I’ll do my best to paint a picture of my relationship with the world of dermal impairment which I’m sure many of you will be able to relate to.
I recently stopped using topical steroid creams on March 11, 2015 and it wasn’t something that I was planning to do. I’ll get there in a moment.
First, let’s go back.
I have a family history of eczema. My mum gets a bit from time to time, but my grandfather (her dad) had severe dermatitis. He was discharged from the army during WWII when he was fighting in the tropics as his rashes were so bad. My uncle on that side also has terrible skin problems and my brothers get localised rashes (nothing severe).
My mum tells me that I had shocking cradle cap (which I’ve recently discovered is seborrheic dermatitis) when I was a child but soon grew out of it. Not sure if I was treated with any drugs at the time, I’ll do some research and fill in that gap. I got asthma from 7 years old and was hospitalised twice (overnight) for that.
My first case of eczema was when I was in late primary school / early high school. I developed a rash on my butt that grew and grew, went to the GP (I lived in a small country town) and he prescribed some steroid cream – I think it was Elocon. I used that and as far as I remember it cleared up but reappeared several times never giving me too much grief.
I used moisturiser for dry skin on my face but no eczema on other areas of my body.
When I was around 21 I went to SE Asia to study for a semester of uni and recall getting some heat rashes behind my knees and some ringworm occasionally but nothing too unbearable. I can’t recall if I treated them with steroids at the time. During the last week of my stay I ate something questionable and got violently ill – burning at both ends and was really sick for a few days. I came home and continued uni ready for my final year. I was partying pretty much every weekend, drinking a lot and staying out. I recall having no energy at the time but pushing through so I socialise and stay out with friends. I started to notice a burning rash on my face that I thought was an allergy to dust, cats an whatever else but pushed it to the back of my mind and continued drinking, partying and having a good time. I also started getting spontaneous hives on my arms – only a few times but all around the time the itching and rashes started.
Over time, the rash got worse, spreading across my face and finally all over my back and chest. My back was completely covered with eczema. I started taking cold showers at night because my face would stay red all day if I took a shower in the morning, stopped playing sport because it was too embarrassing with my tomato face and withdrew. I lost confidence dealing with people (to a point) and looked to find answers. I knew something was wrong, something was taking all my energy and like a flash of light I realised that I must have a parasite.
I started my first grad job and as you would expect, I went and sort treatment to get rid of it and get my life back on track. Wrong… I finally went to a specialist, but the wrong kind. I was earning money so I saw a dermatologist which is damn expensive for a youngster. In absolute desperation, I couldn’t eat anything without flaring, my scalp was starting to oozing and the rash on my face was nasty, trusting his experience and judgement to sort out my problems. This was it, I had eczema which was clear (even though I remember him questioning himself whether it could be psoriasis which it wasn’t), and he was the one to point me to the solution. I remember walking out of there with so many scripts and then of to the chemist to fill my back with goodies – creams of all sorts, diprosone, elocon, eleuphrat, hydrozole and others I’m sure, all for different parts of my body.
I got to it, applying myself like a good student following instructions from the teacher and saw no results. I went back and that’s when the prednisolone tablets started. They were awful, made my skin great for a few hours but my anxiety went through the roof. I hated taking them but got addicted to the good skin and the safety of looking normal for a while. I used them as instructed by the dermatologist and used them whenever I went out to make myself look OK but the side effects, especially the anxiety made me stop.
I was still partying hard at the time and I recall drinking alcohol making my skin good at the time (maybe I was just drunk and didn’t care) but then it would take a week for my flareups to go down… Terrible cycle. I stopped going to the specialist but kept on with the creams on my face (and sometimes junk which got incredibly itchy) mostly and just moisturiser on my body. My skin continued to flare but I worked out what not to eat as food was playing a huge part in contributing to the flares. I thought I was allergic or at least intolerant to everything and I lost so much weight. There were no ITSAN forums or anything like that and I suffered alone. It sucked so much, was holding me back socially and professionally, and I remember thinking that I can’t be the only person suffering from this, there must be an answer – it couldn’t be that difficult.
Through managing my food and limiting exercise and using supplements (I was taking Threelac – cost me so much money – as I was convinced I had candida) I could limit my redness to a point where I could function but my skin was dictating my decisions. Get in the spa? Nope. Join the whatever team? Nope. Voice my opinion in a meeting and risk turning red breaking out in a rash for a week or more? Nope. I felt that I was about 30% of my true self.
I saved up and headed on a trip overseas – first to travel for a year and then settle in Europe for a working holiday with plans to stay an extended period.
The first period was fine, I got so much sun, wasn’t working so had no stress but occasionally would flareup slightly making me acutely aware that my problems weren’t over. 10 months in to the trip I bailed, I needed to go home and get my health sorted out. It was my priority.
I came home, got my old job back and then found a holistic doctor who specialised in digestive problems to sort out the parasite that I thought I had but never got treated. I chose them to get away from the steroids and treat the source of the problem. After thousands of dollars in debt later and tests coming out of tests assessing all kinds of things coming out of me, it was concluded that I had leaky gut and I was sent off to a dietician. I can’t remember 100% but I think that I was still using hydrozole on my face whenever I had flareups.
The advice I got was great – we worked out that most likely I got a bug during my uni trip and things went downhill from there – this was now four or five years later. I went on to a diet and after three months felt that things were getting better. I learned a lot about health foods, living and eating well. I had a life again but I was still using mild steroids in the bad periods.
Due to life’s twists and turns I found myself overseas again, this time for five years in Japan where my eczema started playing up from time to time again, usually seasonal but drinking was also a major factor. I would flareup after beer sessions although the food was not generally a factor. I saw a dermatologist in one of the dry winters who prescribed some steroid cream for my body and some moisturiser. I lathered that stuff on the recurring eczema my legs and butt which came back and a weaker steroid for my face. I was using again daily, and I didn’t know what the stuff was as it was made by the pharmacist in a nondescript tub. It seemed harmless.
Just before I left to return home to Australia I got a fever and terrible mouth ulcers. I was really stressed about the move and my immune system was shot.
I came back home in June last year in winter and started looking for work, a house and all the other stressful things you have to do. I found a temp job for a month and the last day I was there I started breaking out with red lips – I thought it was just from the dryness but it was dermatitis. I went away with friends and the following day after a big night I started feeling I was coming down with something . A day later I broke out in a pimply rash on my face that looked like adult acne and went to the doctor. He said it was shaving rash and gave me some Dermaid – a steroid to put on my face. I was using once again. That rash scabbed up and looked like I had measles for a few weeks and I forgot about it.
I found a job that turned out to be highly stressful and once again, about a month or two after the first rash I started breaking out in similar rash, this time like chicken pox. My lymph nodes next to my ears were massive, and the rash got worse over the next day. I thought I was going to die and researched on the net the possibilties and came up with eczema herpeticum as I had also started getting cold sores in the last year. I was freaking out to say the least and that’s when I stumbled across a girl’s blog, a severe eczema sufferer who was going through topical steroid withdrawal (TSW) and I thought that’s crazy, why would she do that… I just wanted to go to a doctor and get the strongest drugs to get this rash off my face (I’ll post a pic of that one at some stage). Doc said it was school sores (impetigo) and gave me a month worth of antibiotics and Advantan (strong fatty steroid ointment) to use on my face. I didn’t even think twice about that, just lathered it on. It took a good three weeks for the symptoms to subside and as I was working casually couldn’t afford to take too much time off work. I looked hideous.
Four months later and a lot of stress from my job accompanied with the summer Christmas parties, eating/drinking etc I started getting eczema again on my arms and neck. I also broke out in the face rash again for the third time but just went with antibiotics this time. The doc, a different one, said it was shaving rash (pseudofolliculitis barbae) and it cleared up in a few weeks. I’d had enough, I had these recurring infections (staph basically) swollen lymph nodes, eczema on my arms and groin and an infected fungal rash in my armpits that I’d been battling for years and was treating with the cream Resolve Plus (steroid). I had no trust in dermatologists who were expensive and just pumped me full of steroids, no GP that I saw really gave two shits about the cause of the problems so i researched online and started reading about alternative treatments.
I still thought this was from candida overgrowth so I Googled candida diet and my healthcare provider and and ayurvedic clinic came up. I started reading, liked what I saw and quickly booked an appointment. I had just finished my job and I was starting a new one, feeling good with the steroids doing their work clearing up my skin and went in to see the doctor. He was very thorough, so calm and explained how he would approach the treatment, all natural, no steroid creams or tablets, just diet, supplements and eliminating toxins. He told me to stop using all steroid creams. I was a little dubious but went along. That was on 11 March, 2015.
I started taking the supplements and the next day my bowels exploded (he warned me about that) and I started to feel terrible. I had a slight rash that I had been treating with Hyrdrozole that came back with a vengeance. My faced started to burn puff up and my fungal armpit rash came straight back, worse than ever. My groin and leg eczema flared and my arms started rashing up. i though it was the ayurvedic herbs causing die off (could be the case) and started researching online about eczema getting worse after stopping steroids / starting herbs and I landed on the ITSAN page. It blew my mind seeing what people are going through. I’m now off the steroids and addicted to the forum. I’ve been reading all the papers on TSW and how inadvertently I’m in the same boat. It wasn’t the herbs or die off, but me going through TSW myself that was bringing everything back.
I was doubtful in the beginning about me going through that as some people seem to have taken/used less steroids than myself for shorter periods and having horrible reactions. I’ve noticed that I’m getting worse, the rashes are spreading and I’m a lot itchier but it’s been manageable. I’m using only coconut oil to moisturise (sometimes QV when I’m at work) and following an ayurvedic diet with the supplements to eliminate toxins. I’m eating extremely healthy meals, getting as much sun as possible and lightly exercising when I feel I can. I have a patchy purple rash on my neck that’s spreading down my shoulder. My face is permanently red and pretty dry and I had a slight staph infection around my top lip last night. I treated it with apple cider vinegar before bed and was gone today. That was pretty lucky it didn’t spread to my face like in the past.
Anyway, thanks to the ITSAN site giving me the encouragement (and scaring the shit out of me as to what might be coming) I think I’m getting prepared to let me body prepare itself naturally. I don’t use topical steroids. I’m done. I’m ready to get to the next stage and stop that dictating my life and the decisions I make. Feel free to comment or contact me at any stage. It was extremely cathartic getting this all down on paper (of sorts). I think I’ve missed pieces here and there which I’ll touch up and add where I remember. I’ll make sure that I put pics up when I have a chance to document progress.
Thanks for reading and good luck out there!