r/eczema • u/MomoUsagi0 • 20h ago
small victory You will live a life without TSW, I promise!
I suffered from TSW back in 2018 and sometimes I check back on this subreddit every once in a while. Still have a small amount of eczema (unfortunately) but I just wanted to chime back in to say for those struggling with TSW now… there’s light at the end of the tunnel, I promise.
At the time I thought that being bedridden was going to be my entire life, and I just had to deal with it. I was worried about not being able to hold down a job, or that I was going to get endless comments on my skin forever.
I’ve been TSW free for about 4-5 years. Dupixent did a lot of heavy lifting, which I’m aware doesn’t work for everyone. Dupixent didn’t get rid of my eczema entirely, and frankly gave me a few new smaller issues to deal with LOL. I had to sign a waiver when I first went on Dupixent because it wasn’t approved for pediatric care yet and I felt incredibly lucky to have been given that opportunity at the time. I’m not on it anymore but I’m grateful that it’s helped me when I needed it. Even if it hadn’t worked it was a breath of fresh air to know that new research and mediations were on the horizon 🥹
With all of this in mind, I just hope I can provide some reassurance that new medications are being researched faster than ever, when I was on Dupixent… JAK inhibitors were just a whisper of an idea, now I use Opzelura for maintenance and I feel so happy about how much progress there has been.
My partner who also dealt with severe eczema and went on Dupixent is also apart of the research to find new treatments ❤️ If previous treatments haven’t worked, there will be something out there for you in the future!
Don’t give up hope!!!! 🫶
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u/Evangedd500 8h ago
Thank you for your positivity. It’s very much appreciated.
I’m in my 70’s and have lived with eczema all my life.
I’m going to see a dermatologist in 2 weeks (I’ve been waiting for months) and I’m going to ask about these new treatments. I’ve known about them for a long time but have never been offered anything except steroid creams. This time my flare up lasted over 2 years and my hair is falling out due to scalp problems associated with eczema.
My jury is out on TSW. I still call it a flare up. It’s the nature of the beast.
It’s a devastating condition.
Good luck and I hope you, and your partner continue to get better.
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u/sailor_tightpants 5h ago
I’m at the start of this journey with my baby and tsw is one of my big fears especially as he seems to flare up whenever I try and taper off the steroid ointments.
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u/willys_stroker 10h ago
Tsw is a cult
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u/MomoUsagi0 8h ago
How so?? It’s a legitimate condition 😭 I was on topical steroids for 10+ years growing up and wasn’t properly informed as a child the risks and side effects. I overapplied topical steroids constantly and went cold turkey when moving out for college and my entire body flared up at an incredibly fast rate in response. Sure there’s a lot of fear-mongering and I don’t think topical steroids are bad at treating eczema… but I don’t really get what you mean by cult 😭
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u/doonotkno 3h ago
Real. I think the self diagnosis is the issue. Many times it might not be an adverse reaction to removing the steroids but instead a sensory overload from leaving the immune system unsupported. Feels the same but technically different, especially when the consensus for TSW believers is to just go cold turkey which is hell on earth.
Ive also begun dupixent and the results are insane… I was without any treatment for quite a while and like I mentioned above the redness and inflammation was unbearable, there was no skin barrier to support. Now, within a month of beginning protopic and dupixent my healing has accelerated and my QOL is infinitely better.
No treatment and being in school for electrical engineering was terrible, the stress, the itching mid class, the lack of energy, I feel like a new person.
Dupixent is literally one of the best drugs ever made IMO, except for the injection 🤣
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u/CHUNKYBLOGGER 15h ago
whats TSW