Guest Post: Karen's Story

“Look at these funny spots on my cheek,” I said to my partner, “they’ve been there for two weeks now.” It was a small cluster of tiny red spots on one side of my face. I was mildly perturbed, kept an eye on them. Then a few days later I woke to swollen cheeks covered in red, pustular pimples. Now I was worried. I made an appointment with my dermatologist for the next afternoon. She told me it was steroid-induced rosacea.

“But, I don’t put elocon on my face,” I told her, “never have.” I knew how risky that was.

“You probably had it on your fingertips from using it elsewhere,” she said, “then touched your face.”

I wasn’t convinced. I had hardly used elocon in the preceding weeks. A month or two prior I’d had eczema on the back of my legs that I just couldn’t shake with the elocon. My dermatologist told me I was being too conservative with the steroid cream. “Use it more thickly, give it a good coverage,” she had said. I had always been told not to overuse it, so I was a little confused. However, I did as she said and, once my legs showed some improvement, I lightened up on the steroids. So I knew that I’d hardly used any in the weeks leading up to the facial rash. I went home and resolved not to use elocon at all, anywhere. Within a month, I was back at the dermatologist’s office. My face, neck, forearms and hands were bright red, swollen and itchy. I was distressed. I was going through topical steroid withdrawal. I had Red Skin Syndrome. But neither of us knew it at the time. I begged for a course of prednisone. She obliged.

I had five blissful days of clear skin. Then, as I tapered off the medication, my neck started to get red and itchy again. And my face. And my arms. And my hands. I stopped the prednisone and the next day (day two of steroid withdrawal) my face was burning hot and had starting weeping an oozy, yellow liquid. My eyes were swollen, my stomach was itchy, my legs were getting itchy behind my knees. By day 3, my armpits were hot, red and sore to touch. By day five, I had red, hot, itchy skin all over my body and yellow ooze all over my face, neck and arms. I had oedema in my hands and arms.

By day seven, I had found Peter’s website and Kelly’s website and had read Dr Rapaport’s articles. I had Red Skin Syndrome and I knew it. I went back to the dermatologist (what was I thinking?). I took a copy of Dr Rapaport’s latest article with me. Guess what? She said there was no such thing as steroid addiction (even though she believed in steroid-induced rosacea) and she definitely didn’t want to read the article. She tried to give it back to me but I insisted on leaving it with her. She said that I either had a condition called pityriasis rosacea (looks nothing like Red Skin Syndrome) or I was having an allergic reaction to a medication I was taking at the time. She wrapped my arms in zinc bandages and told me to come back in four days to have them changed. I never went back.

The next three months were hell. I developed severe oedema in my legs and feet, was largely bedridden, certainly didn’t leave my house in that time (couldn’t wear shoes, let alone any clothes other than a sarong and old t-shirt). My skin exuded, burned, flaked and itched. I shivered uncontrollably. My lymph nodes grew to the size of grapes. My legs ached, it was painful to walk. I looked a mess. I was a mess.I cried. A lot.
15th August 2011

I would not have been able to endure this terrible time without the support of the google group “Cure Eczema by Stopping Steroids”. I checked into this group daily and drew enormous support from others going through the same nightmare as me. I kept a diary of my progress (although, for a long time it didn’t feel like progress). This is what I wrote on day 95 (more than three months after ceasing steroids):

Face is mostly clear, gets blotchy at times, particularly after a shower. Cheeks are good, chin and forehead get very flaky some days. Neck still gets very dry and itchy, have to moisturise it once or twice throughout the night to stop myself from scratching at it. Arms cycle through being very dry, smooth and itchy. They sting when scratched. Legs still get very itchy and weep clear fluid when scratched. Ankles are still thick and swollen and get very itchy. Feet still very red, deep fissures around toes. Hands still very, very ugly – toad skin, get very itchy at night and weep, fingers swollen and sore between digits. Torso minimally affected – red, dry and mildly itchy. Don’t feel like I have made much progress for weeks – just keep going through the cycle of red, dry, flake, smooth, pink, etc. Am still essentially housebound. I go out to pick up the boys from school and can manage to stop at the supermarket for a short trip but always keen to get back home and into more comfortable clothing. Get too itchy if have to limit Vaseline use. Days are still very unproductive. 

25th September 2011

In months four and five, the oedema slowly receded, the weeping eventually stopped and I was left mainly with itchiness to deal with and perpetually pink skin. Thankfully, my energy levels returned and I started to get active again and enjoy life.

It is now eight months since I ceased using steroids and my skin is finally showing signs of recovering from topical steroid abuse. It has its normal colour back most of the time, some areas are still dry and get itchy occasionally. The skin on my legs and feet is still damaged from daily scratching but is healing slowly.

Red Skin Syndrome is an awful and completely preventable condition that has not only affected my skin, but my whole life and that of my loved ones. It has taken me to the darkest depths of despair but also taught me to be patient and persevere. The healing process is a slow and painful one, but thankfully, a successful one for those who can endure it.

Latest photo taken 1 April 2012