I’ve been having eczema for as long as I can remember. The first stories stem from the time I was still a premature baby. I don’t remember much from my eczema when I was a little kid though, besides that the affected areas were usually my face, neck and the folds of my arms and knees. It didn’t take long before the doctors found out that I also had many allergies: dust mites, pollen, pet dander, dairy and nickel. Doctors started to prescribe oral antihistamines (at the time Zyrtec), moisturizers and corticosteroids. I don’t know when I started to use topical steroids for the first time, but I guess it must have been around the age of 6 or 7. When looking at photos of myself, my eczema peaked around the age of 7 and 8 (see the picture below).
From age 10 to 16, I had little to no skin problems. I mean, I still had my known allergies and I couldn’t just use any cream or product on my dry sensitive skin, but it looked smooth and normal. If I knew what would have been coming in the future, I would have praised myself lucky, but at that time I just thought it was normal.
I don’t know what caused the sudden change: stressful life events (at sixteen, I had my first relationship, unfortunately with many ups and downs)? Hormonal changes? Something else? I still don’t know and to doctors it is also a mystery. Anyhow, it started off with an allergic reaction to a lip balm I had been using for years. My lips were swollen, scaly and surrounded by redness as a result. Around that time I also started to get eczema again. To make it even worse, my ex-boyfriend and I broke up a few months later and he left me with a herpes simplex infection, or cold sores, as most people call it. It wasn’t just a simple cold sore. My lips were fully affected and there were times that I couldn’t even open my mouth due to the crusts. I had a new herpes simplex outbreak every month around the time of my period, and this for about six months. Luckily I got less and less flare-ups and if I got one, they were less severe.
My eczema was on and off, mostly at its worst in autumn and winter and at its best at summer. I never reached that “perfect” skin I had before age sixteen anymore, despite often using topical steroids* prescribed by the 1st dermatologist I ever went to. But it progressively got worse over the past 3 years: from constant eyelid dermatitis and hives one year (probably both allergic reactions to something) to a persistent impetigo infection and spreading eczema the next. And this year, it has spread all over my body. Only the palms of my hands and my soles aren’t affected. I’m shedding skin like I’m an overactive snake. My skin burns, itches and is red and irritated/broken most of the time.
Desperate because of the impetigo and the worsening eczema I experienced a year and a half ago, I went to an other dermatologist who provided light therapy and hoped she could help me. I told her that I didn’t want to use topical steroids anymore because I was worried that my skin was already thinned because of it (it doesn’t cost much effort to get wounds). The response of my (now ex-)dermatologist was UVB light therapy, but also more and more potent topical steroids. She denied that my skin was thinned and told me I HAD to use corticosteroids for a while in order for my eczema to go away. They made my skin better for a few months but when I quit, it came back. I was using topical steroids* almost all the time, while many say you should only use it for 2 weeks max. I asked the dermatologist after a few months if I should still use the topical steroids and she said yes. I started to see less and less clearing, and because I was worried about how the cortisone would affect my skin, I started to use it less and less. Only in “emergencies”. I also quit the UVB treatment, because it didn’t seem to help that much
On tumblr, I came across eczema sufferers who were going through “topical steroid withdrawal” or TSW and “red skin syndrome” or RSS. I started to do more research about it and found out about the website itsan.org. There I read all about the symptoms of this withdrawal and I was shocked and at the same time relieved that I recognised myself in them. As a response, I quit topical steroids alltogether and I will keep this blog as my diary through this probably hellish journey. It helped me to read other TSW sufferers’ blog, so I hope mine will also be informative for other people.
* I used Elocom on my body and face, Diprolene on my hands and fingers (prescribed by my 1st dermatologist). The 2nd dermatologist prescribed me bethamethasone diproprionate.