Published on the WebMD blog.
Topical Steroid Withdrawal (TSW) is hard for me to write about. I went through it 6 years ago and it was one of the worst experiences of my life. I didn’t know I was going through it at the time, and even today there’s still much I don’t know about it. What I do know is that I would never wish TSW on anyone.
What Is TSW?
Topical Steroid Withdrawal (TSW) syndrome is torture. It’s also known as the Red Syndrome because your skin looks and feels like it’s in flames from head to toe -- deep red, and so hot. It’s the result of your body’s reaction to stopping the use of topical steroid creams and ointments. And, although we’re accustomed to body reactions lasting just a few hours or days, TSW syndrome (TSWS) takes months and even years for some to overcome. I went through it while I was pregnant with my first child -- I stopped using topical steroids because of my pregnancy.
What Does TSW Feel and Look Like?
TSW is well known at this point, so a formal list of symptoms and photos are easily accessible. Here’s what it looked like for me, which I’ve also seen in others with TSW:
Statue-like skin: My skin was so dry, thick, and hardened that it felt like I had a statue for a body. Sometimes I couldn’t smile and at times it was hard for me to turn my neck when I drove.
Oozing skin: It’s as unpleasant as it sounds.
Flaky skin: Ever felt like eczema flaky skin looks like snow? With TSW, it felt like a snow blizzard. It was more of a complete shedding of my skin as if I were a reptile.
Edema: I learned about edema when I woke up with my eyes so swollen and oozy that I couldn’t open them.
Unbearable itch: The itch was constant and to the extreme. I didn’t sleep for days at a time. The lack of sleep (while pregnant) was one of the hardest parts of TSW for me.
Hot, hot skin: The heat was so uncomfortable. It was hot to the touch. It was red and hot; it felt like I was burning.
Adverse to everything: I couldn’t put anything on my skin, including water. Everything burned – especially non-steroid ointments and creams. But I still had to wash my skin, because of a potential infection. My husband would help slather my skin at night after a painful shower and I would pace around my room, muttering a mantra until the burning calmed down.
Swollen and aged looking: TSW changed the skin on my face and body. I didn’t look like myself. I was swollen and had lines on my skin everywhere. I looked 20 years older and as if I wasn’t aging gracefully. I didn’t like how I looked when I went through TSW.
Getting a TSW Diagnosis
Here’s the kicker: Doctors may often overlook TSW. I believe it’s becoming more recognized and accepted by the medical industry nowadays, but not nearly enough yet. Six years ago, when I went through TSW, I had been dealing with moderate to severe eczema for a decade already, but my condition was so severe that I questioned whether it was even eczema. I went to see a dermatologist and she said, “Yes, it’s eczema, and it could be worse.”. But that doctor was wrong! It wasn’t eczema, it was TSW syndrome.
A fellow eczema fighter on social media let me know that I had gone through TSW after she saw my blog.
TSW typically occurs in people because you are usually prescribed topical steroids. But TSW is not technically eczema -- it’s like the monster sibling to the eczema beast. They are closely related but are technically different. I didn’t realize this for a long time.
The TSW Cure
There’s one thing that helps: time. I was lucky that my TSW symptoms calmed down toward the end of my pregnancy. Even luckier, I was able to get on a biologic medication after I gave birth and it cleared up the rest of my TSW symptoms. But these medications aren’t without side effects. Many people with TSW are adamant about just waiting it out, though it could be years.
Surviving TSW
Though there’s no easy cure for TSW syndrome, there are things that helped me get through my TSW.
Ice/cool packs. These were especially necessary at night to help with the heat of my body while on my mattress and bedsheets.
Acupuncture. This helped me, I believe. My acupuncturist was so caring that she even came to my house for my treatment once or twice.
Family and friend support. TSW was hard on my mental health; the support from my friends and family was essential.
Journaling. At the time, I didn’t know I was going through TSW, so I was all alone in my journey. I wrote in my journal and my Itchy Pineapple blog to get through it.
Meditation. I had mantras and was doing breathing exercises to deal with the torture of TSW.
Hand vacuum. I used this on my bed when I woke up or in the middle of the night to deal with the many skin flakes. It was hard to lay on dirty, flaky sheets.
Social media groups for TSW. I engaged in eczema groups while I went through TSW but didn’t join TSW groups until afterward. Nothing (except for a cure!) beats being connected to people with the same condition. There are TSW groups on Reddit, Instagram, and Facebook – all are active and supportive.
I am a silver-lining type of person, so here’s the silver lining to TSW: Every day that I don’t have TSW is a wonderful gift. I’ve been TSW-free for 5 years now and my worst eczema days do not compare by even a sliver to my worst TSW days.
To my eczema-fighting peers, if you think you may have TSW syndrome, research it online, connect with TSW groups and talk to others with TSW. Consider all your options and stay strong. You’re not alone.
