Daniel, age 26
Topical Steroid Withdrawal: 10 months
How did your health condition begin?
I was diagnosed with eczema as a child, but it never really bothered me that much until I was at the end of high school at age 17. I had an inflamed patch under my eye and in-between my arms and behind my knees, so I was prescribed steroids to treat them from a dermatologist.
What steroid medications did you use?
I used Advantan Fatty Ointment (Methylprednisolone aceponate) for my face and Eleuphrat (Betamethasone dipropionate) for my body and hands. I also used Novasone corticosteroid drops (Mometasone furoate) for my scalp.
For how long?
I was using them on and off since I was 17 but from 2015 – 2021 I used it far more frequently, until it was pretty much daily for a few years. My body needed more and more to stop the flare ups. As I saw my doctors during this time, they said it was fine to continue using it, and even prescribed me more! (ugh)
How did you discover what you were going through?
I remembered hearing of TSW Syndrome on the internet in 2016 or 2017. But at the time I could not comprehend NOT needing to use steroids, so it passed by my head. I then started researching RSS (Red Skin Syndrome) and TSA (Topical Steroid Addiction) during 2020 when I went through multiple major flare ups. I noticed I needed to use WAY more emollients to even function, and that’s when I knew that something was very wrong. I started researching TSW more and found ITSAN, ScratchThat, and a bevy of YouTube videos, before finally deciding to go cold turkey on January 6th, 2022.
What kind of help during TSW do you wish from the medical community?
I am not sure if they could have even done anything to help me speed up the process. I did NOT want to replace my steroid addiction with another form of medication, so I’m glad that I was able to heal completely naturally. I just wish that this was medically recognised from doctors so it’s not such a major disruption to life and work. But the best support from the medical community is just prevention – I wish my doctors had been aware of steroid addiction before prescribing me more and more, and even dismissing my concerns about using steroids for that long.
What treatments have you tried? What worked/what didn’t work?
I used a modified form of NMT except I did not limit my drinking intake. I stopped all moisturisers, showered once every 2 days (or when needed), and let my body heal and rest as much as possible. I was very fortunate enough to be supported by my family, and I was housebound for about 7 or 8 months. I went through extreme flaking, oozing, irregular thermoregulation (it was 40 degrees in Australia and I was shivering), painful flare ups, bleeding and cracked skin, crusting, facial swelling and of course, the itch attacks. Oh man, the itch attacks.
I meditated every night (Whim Hoff breathing method) and I tried to eat as healthy as possible, as well as exercising any chance I could (within reason, of course). I’m fully aware that what works for me might not work for other people, but I am just speaking for my own experiences. It was painful and by far the worst experience I’ve physically endured, but I found incredible mental strength in my support networks and people rooting for me.
I also saw a massive improvement once I began using Medihoney (about 4 months in) around the oozy/crusty areas. It was an antibacterial cream so it didn’t trigger my skin and over time it started healing.
How are you doing today?
Nothing lasts forever, even TSW. So eventually, the pain went away, and so did the redness, and so did the flaking. My scalp (which was one of my worst areas while USING steroids) completely healed and is no longer itchy. My face healed completely, and so did my hand. I ended up getting my life back and I’m even better now than I was on all the steroid creams, which is insane to me.
I’m 307 days in TSW and I feel like I’ve healed really fast. I still have mild eczema around my back and ribcage, as well as my legs, but I’ve noticed that they’re also calming down a lot more as time goes on. My last huge flare up was 3 or 4 months ago, and since then, everything has seemed to chill out. I can take hot showers now and not be affected – I can sleep normally and my skin even produces its own oils now!