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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.

Choosing TSW

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.

ITSAN

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.

During TSW

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.

Hair loss

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!

Insomnia

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.

Unbearable itchiness

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AtopicDermatitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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