We all may be walking beside each other, but our stories are never the same.
Work: Programme Manager
Date of Withdrawal:
What type(s) of steroids did you use?
Hydrocortisone, Dermovate, Prednisolone (oral steroid)
Are you on any other medication?
Do you have a supportive doctor?
Yes, but they are on the fence about TSW
What is/was your favorite comfort product?
Dead Sea salt baths, ice packs
What is the hardest thing you’ve had to endure during your withdrawal?
My face was badly affected in the first 6 months. I had a hideous thick crust around my mouth which was really disfiguring and very painful. I could only eat with a teaspoon and drink through a straw. At the same time, I had other bad symptoms on my hands and legs. I barely left the house and was unable to do fun things with my 4 year old, which was heartbreaking.
What is one thing you are grateful for during the withdrawal process?
My family – my husband has been such an amazing support and my daughter is the light that keeps me going.
How did you discover you had TSW?
I was prescribed Dermovate (Clobetasol) for a small rash on my hand. It cleared while I was using it but, as soon as I stopped, the rash came back worse and spreading. Each time I went back to the doctor, I was prescribed more Dermovate. Eventually it spread all over my body and face. My skin was bright red, burning, stinging, intensely itchy. My face was horribly swollen. I couldn’t sleep for more that 1-2 hours at night and my temperature regulation went crazy. I knew something was wrong, and then found ITSAN. As soon as I read the symptoms I knew it was TSW.
What were the first tell tale symptoms you experienced?
Spreading, worsening red rashes on my arms – red sleeves.
What is one memory during the withdrawal that you will never forget?
One night, waking up with ooze flowing down my arms even though there were no open wounds. It was the first time I’d had ooze. I couldn’t understand where it was coming from, it was like it was leaking out of my pores. I spent the night with my arms wrapped in towels. It was horrible.
How is your TSW journey going?
I’m 13 months and thankfully my face is much better and flares are much less severe, less frequent, and pass more quickly. My legs are also much better. My hands and arms are still pretty bad but they are where I used the cream, so I guess they will take longer to heal. I am able to work, play with my daughter, and get out of the house, so I’m grateful for that. I couldn’t do those things this time last year.
If you had a call to action for the medical community, what would it be?
Listen to your patients! No one goes looking for TSW, most of us find ourselves here because the steroids no longer worked.
What was a pastime you used to help during TSW?
Listening to podcasts/audiobooks in the bath.
What is something you wish to share with the community?
In my experience, you have to take a big step back to see the healing happen. Take lots of photos along the way, on good days and bad days, so you can go back and compare. And it’s not a linear journey so expect that sometimes it will get worse before it gets better. But it will get better.
What is a quote you live by?
“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” —Martin Luther King
What resources help during TSW?
- Facebook groups
- TSW Atlas
- Preventable documentary
What is your instagram handle?
jessk_tsw (I don’t post much)
Thank you, Jess.
We love you. We see you. We are you.
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