Tried & Failed TSW (Topical Steriod Withdrawal)
I have suffered from eczema all my life, but I had it managed for most of my life up until 2014. Something changed in my body in 2014 and my immune system went down. My skin was extremely red, hot, and very itchy.
Red, itchy, and hot
It did not matter what I ate or drank, it did not matter how cold I tried to keep myself; I always found that I was red, itchy and hot. I went to several different doctors, allergists, and dermatologists. Still, I could not find any answers and continued to suffer.
Finding TSW on Instagram
I started looking on Instagram and found people that were going through topical steroid withdrawal (TSW) and read more about the addiction and red skin syndrome. It was that moment it all made sense, that it was the addiction to the topical steroid and prednisone that was making me have such severe skin conditions.
My topical steroid withdrawal experience
I planned to go off it all, topical steroid creams and prednisone after my trip to New Zealand. I started my TSW on February 12th, going off everything.
5 days of topical steroid withdrawal
Within 5 days I was seeing change. My skin was getting worse and worse, 7 days in, and my skin was completely dried out and flaking. I had to vacuum my bed every day, I did not want to shower. I was shedding so much skin it was unbelievable. My life seemed like it was falling apart. I felt depressed. I could not sleep. I did not want to be seen by anyone.
9 days of topical steroid withdrawal
Nine days in and my body started to retain water and I was starting to swell from head to toe. My neck and ears were weeping. I was finding that I was not going to the toilet even for a pee. I was peeing maybe twice a day which raised serious alarm bells for me.
Day 11 and 12 of topical steroid withdrawal
Eleven days in I could not bend my legs because they were so swollen. Twelve days in work told me to go home as I looked like death! I went to the doctor and told him what was going on. Showed him that my legs were swollen, I could not walk properly, and I was not going to the toilet. He told me to get a blood test and said that my kidneys may be failing. He told me to go to the hospital, he said: "You should be going to the emergency room right now."
Complications of topical steroid withdrawal
So I lasted twelve days on TSW and ended up in the hospital! They rushed me straight into the emergency room, I was suffering from a number of issues.
- Erythrodermic flare of atopic dermatitis (My skin was failing)
- Golden staph infection in my blood
- Deranged liver enzymes
- Eczema herpeticum
- Hypothalamus-pituitary-adrenal axis suppression
Treating failed topical steroid withdrawal
I was in the hospital for 7 days. My treatment included wet wraps twice a day, back on topical steroid creams, back on prednisone, anti-virals, antibiotics for the staph infection. I had a team of 8 dermatologists coming to see me every day and studying my improvements. I was getting good care from them.
Post-hospital stay after failed TSW
In order to be released from the hospital, I had to have a PICC line installed into my arm with a 24/7 antibiotic drip. The PICC line was inserted into my arm with a catheter that went to my heart.
Post-hospital I was on prednisone for 6 weeks and week by week my dosage was less and less. I had to increase my cortisol levels and boost my immune system back up. I am doing wet wraps once a day and now still on topical steroid cream.
Will I try TSW again?
Topical steroid withdrawal did not work for me. I tried it, I suffered, I would say that it was a horrible experience that ended with me in the hospital. I will not be trying it again.
The TSW experience did lead to me getting proper care from a great team of dermatologists that got me back on track, and I am happy to say 6 months later that I no longer suffer from red skin syndrome. I am no longer itchy all the time and hot. My skin and immune system are much better!
Did you know October is eczema awareness month?