My TSW Experience: The Physical Side Effects
TSW is exactly what the name is – topical steroid withdrawal. Topical steroids are one of the oldest Western treatments for those living with conditions like eczema, psoriasis, lupus and more. Although it appears to be a little tube that provides temporary relief, its side effects are powerful beyond measure and dangerous, if not used correctly or with limitation.
Note: The following article is my experience with topical steroid withdrawal (TSW). The information listed below are of my own personal opinion, considered high-risk, and should not be tempted without the guidance of a healthcare professional.
Topical steroid withdrawal (TSW) was probably one of the most challenging, depressing, agonizing treatments I have ever consciously decided to partake in.
I decided to withdraw from topical steroids in 2014, after experiencing one of the worst flares of my adult life. You can read more about that exact moment in a past article I had written here.
As with any other flare I had up to that point, I had applied the topical steroids assuming and expecting to do what it had always done – clear my skin. Just one problem…it wasn’t working this time. This led me into major anxiety, as for the first time in my life, I had to seek an alternative to relieve me from my eczema.
That’s when I came across ITSAN.org, an organization and community that brings awareness to TSW. My mind was blown away after reading everything on their website and doing my own personal research. I had never considered that the drug I had been prescribed to all these years could leave my body addicted and feening for more.
Because I was so desperate for healing, and despite all of the gruesome side effects that would follow, I decided to try TSW. Why? Because my goal became long-term, sustainable healing, and not just temporary relief.
The next day of not applying steroids, I woke up with swollen cheeks and eyes. At this point, the possibility that my body was addicted to topical steroids was high. It was the only confirmation I needed to continue.
What followed thereafter was unimaginable and nothing I could have ever prepared for. While I read other people’s stories and was afraid of what could happen to me, being in it and experiencing all of the side effects personally was a completely different story. Here are four of many dreadful side effects that made TSW beyond challenging.
Intense (like super intense) skin shedding
One of the first side effects I experienced from TSW was an extensive amount of skin shedding. So much so, that I had to buy a separate vacuum just for my bed to suck up all of the dead skin that was left behind when I would wake up. Yes, it was that intense!
There were piles of dead skin everywhere. On everything I sat on, on everything I wore, wherever I went. Although this was disheartening, embarrassing, and at times made me feel like I looked like a walking monster, it was a sign of healing. My body was trying to produce its own skin for the first time without the dependency of external support. And because I consciously knew this, my dead skin kept me motivated even in moments of despair.
The process of losing my hair was a traumatic experience. If you know me, you also know my curly mane – you just can’t miss it. That’s why, when I started to lose it, including my eyebrows, I felt like I was also losing my identity. My hair, in many ways, was what defined me; it played a significant role in my sense of beauty, joy, and personality.
Hair loss is a common side effect of TSW. Although I don’t exactly understand the logistics as to why it happens, it does. Fortunately, I was confident that my hair would grow back and eventually it did. Thank heavens!
I think I handled most side effects of TSW pretty well – not being able to sleep is not one of them. Insomnia was probably one of the most frustrating and exhausting things I have ever had to endure, especially because I knew that healing and recovery took place best during sleep hours.
The only reason I slept was because my body literally shut down on its own out of pure exhaustion. Otherwise, I wouldn’t go to sleep till about 4 AM everyday, toss, turn, and scratch every hour, and be back up by about 8 AM. The thought alone is tiring! The only thing that kept me going and sane was my faith that healing was on the other side and that I would one day enjoy sleep again.
I don’t think I nor anyone else can express the amount of itchiness that happens during TSW. I was definitely not prepared. Itchiness is not a symptom you can necessarily picture or at least understand the full extent of it; it is something that can only be felt. And TSW definitely multiplied it by 100.
I was always scratching. No matter how many wet wraps, lotion, creams, and oils I put on my skin, nothing was really sustainable. I had better luck distracting myself with work temporarily, as it was only this time that I would find relief for a short period of time.
Other side effects
Although the list above indicates the four most aggressive side effects I experienced during TSW, the list continues. Other notable reactions include: swelling, oozing, bleeding, raw smell, papules (pimple-like bumps), redness, burning, stinging, sun/light sensitivity, skin thinning, “elephant skin,” and more.
Consider before choosing
I tell you all of this to note that TSW is not your average treatment. If you are considering it, I advise doing your own research thoroughly and speaking with a professional healthcare provider who will support you.
On an average day, how would you rate your level of anxiety related to atopic dermatitis?