Briana Banos - Topical Steroid Withdrawal Q&A

1. When did you start using Topical Corticosteroids and what was the reason you were initially prescribed them?

I grew up with eczema, but my troubles truly began while living aboard a cruise ship as a performer. My skin went out of control, and instead of swabbing me for what most likely was a fungal infection, they gave me tons of pills and topicals – one being a topical steroid. The others were Protopic, two antihistamines, an antifungal, and an antibiotic.

2. How long did you use them for and how frequently were you applying? What strengths were you using?

I was on and off of my regimen for almost three years, and the steroid stayed the same – a Class 6 ointment called Alclometasone. Before entering my third contract on board my third ship, they placed me on cyclosporine, an immunosuppressant for a few months due to my skin getting worse and worse. It hit my kidneys pretty hard right away, so I didn’t care to stay on the drug long. It also  didn’t do much for my skin. Then, after the contract ended 6 months later, I was offered a stronger steroid. However, I went with my gut and didn’t start using it.

3. What prompted you to start Topical Steroid Withdrawal? And was it under the guidance of a medical professional?

After my wedding, my skin being so sensitive to everything, my mother made the recommendation of taking a break from all of the stuff I was on. My body did not like that. It took a few months, and two rounds of oral steroids, to realize I was in steroid withdrawal. I saw two different doctors who didn’t recognize it or acknowledge it. And when I was in month two of the withdrawal, I went to a teaching hospital, hoping they would be more receptive, but they were not. “Severe eczema” was my diagnosis. They recommended steroids and a steroid injection.

4. What did you experience physically and emotionally during Topical Steroid Withdrawal?

Emotionally, withdrawal is unimaginable. It is much like being a prisoner of war, with no time frame of being rescued. You just watch everyone else live their life, because yours becomes non-existent. Physically, you watch yourself deteriorate. You ooze, burn, flake, bleed – even your body odour is so foul you wonder if you aren’t actually dying. And most of my hair fell out, not even allowing me the smallest dignity of feeling like a woman.

5. How did Topical Steriod Withdrawal affect your daily life? Work, family, social life etc.

I lost a career I loved, my marriage fell apart, and any energy to be a part of the world was heavily diluted. I try my best to keep a positive mindset, but as the years have drawn on, it gets harder to navigate when the flares strike.

6. What helped you practically during your TSW? eg in terms of skincare, treatment, diet etc.

Baths were the biggest help, be it Westlab Dead Sea Salt, Epsom salt, apple cider vinegar, or bleach baths. Zinc was also a staple in my home, bandaging my oozing areas in hopes the relentless leaking would stop. Eating less sugar and abstaining from things like alcohol and coffee seemed to help as well. Loose fitting, cotton clothing was best.

 7. And what helped you mentally and emotionally?

I find mental relief practices, like breathing exercises and journaling, to be vital in my skin care treatment. Being able to lean on loved ones for support is imperative to healing the heart. When there is no one around to show you grace in this time, it can feel absolutely isolating. And being a part of this strong, incredible community has definitely made this journey easier and brighter.

 8. What top tips would you give to others who are going through Topical Steroid Withdrawal.

• Don’t believe everything you read as “absolute fact” when it comes to healing in this journey. Believe me, no one has it figured out. We are all different and need different things.
• Do not set expectations. Do not set times for your healing. It only leaves you disappointed.
• Ask for help when you need it. You are not a burden and are worthy of so much love.

Briana’s documentary ‘Preventable, protecting the skin’s largest organ’ is essential viewing if you want to learn more about TSW. Here she charts her personal journey while interviewing other TSW patients and medical experts from around the world.