CHI’S STORY: “I BECAME ADDICTED TO MY ECZEMA TREATMENT”
“During TSW, a lot is going on internally. It would have been so helpful to have had a clinic help me manage my addiction. But TSW is not yet recognized by general practitioners and dermatologists. In fact, topical steroids are the most common treatment that a dermatologist prescribes for eczema.
There was never a conversation about alternative treatments or that it was dangerous to stay on a topical steroid for so many years. I felt very betrayed. I may have even grown out of my eczema by now had I not been on the medication.” -Chi Villines, excerpt from “I Became Addicted to My Eczema Treatment,” Verywell Health, Mar 2022
Read “I Became Addicted to My Eczema Treatment”
Source: Verywell Health, Mar 2022
MORE ABOUT CHI’S TSW STORY
Chi shared her TSW healing progress pictures and more of her story with ITSAN to help raise awareness of different stages of TSW on darker skin.
What steroid medications did you use?
Triamcinolone Acetonide .1% ointment
For how long?
22 years. I had severe eczema as a child and started with a low dose. It wasn’t working so when I got older I was able to get on the .1%
Age started topical steroids?
Around 9-10 years old
Age stopped topical steroids?
28 years old (April 2019)
In 2014, without realizing it, I went through my first TSW experience. I had no clue at the time. I had stopped my medication after running out of it. I was unaware of what was going on and had no knowledge of TSW. I immediately thought I was having some sort of allergic reaction and went to the ER where they asked me if I’d ever been tested for lupus? They put me on rounds of antibiotics and I got back on my steroid ointment.
TSW flares started to erupt in 2018, with small reoccurring spots and a very problematic flare on my foot. Again, unknowing that I was going through TSW, I thought my eczema was just taking a turn for the worse. It was apparent that the steroid ointment was not working any longer. These flares would persist even after applying the ointment. I can look back and see the signs of what I know now as Topical Steroid Addiction and Topical Steroid Withdrawal. I wasn’t completely off the steroids around that time I was having a hard time affording medication so it was a time period where I wasn’t using for a few weeks until I was able to afford the medication.
In 2019, I intentionally stopped steroid use. I felt internally I wanted to take a more natural approach to treating my eczema. Having being dependent on the steroids for so long I felt in my soul it was not healthy. While everything happened so fast, the immediate redness and oozing were my first symptoms of TSW. I found out I was going through TSW by visiting ITSAN’s website & following a few accounts on Instagram. From there throughout the next 2-3 years I went through many different flare cycles. The ooze, the dryness, the burning, prickly feeling. Intense bone deep pain. Immobility and adrenal glands compromised. Low heart rate, fatigue and even an intense staph infection on my back that has left me with a scar on my back. The skin would open and close and open and close, and shed and start all over again. Many different textures and symptoms during TSW. I lost so much weight, I became extremely ill and malnourished as I was afraid to eat anything.
Timeframe for TSW to resolve?
One solid year of TSW flare and unmanageable symptoms. After year two, I found my skin barrier was stronger and the symptoms were more manageable but still present.
How many months TSW are you now?
How are you doing now?
Overall I am much better. I have two big flares per year consisting of oozing and pain and sometimes immobility and smaller bouts of irritated dry, itchy skin throughout those times. The pattern is around the New Year and typically an anniversary flare (March-April). My skin, my mind, my career, my life trajectory has all been altered due to TSW. This year seems harder to swallow when I have a flare because there’s longer periods in between each flare now, and outside of the flares my skin is the best it’s ever been.
With that being said, experiencing intense TSW flares after months of clear, unproblematic skin can be quite daunting. Each year physically I feel my skin is getting stronger but mentally it’s challenging to continue going through the patterns. While I still have flares & symptoms they are nowhere near the pain & anguish as in 2019. My skin is stronger as I’ve worked extremely hard to heal from the inside out. Making lifestyle changes and doing the work internally. I don’t think I’ll ever have “perfect” skin but I do believe as the years go by my skin barrier will strengthen making my TSW & eczema symptoms more manageable.