Hi! I'm 3 weeks into TSW, I'm still pretty much inflamed. I'm a flake freak when I wake up. I only ooze on one small patch on my neck, a little on my forehead and my philtrum.

Should I start RLT or should I wait?

I have been on cyclosporine for 6 months, due to full body tsw. I am now into the 2nd month of tapering off.
I taper down every 3 weeks reducing my dosage by 50mg..

Every time i taper down, i seem to flare up my skin goes red raw and starts flaking, and is painful, all over my body.. is this normal?? After about the 14 day mark it seems to clear up quite a bit, then im good for 7 days then i start the process all again, is this normal??

I am now only on 100mg a day until next week when i reach my final dosage of 50mg a day..

After i completely finish the cyclosporine tablets in a few weeks will the flare come and go again completely? or will i be left with the flare for good?

after using steroids and immune supppressants on my face for 2 weeks twice daily with the steroids and then another 2 week daily for immunosuppressants for a small little flake on my face prescribed by a PA (who just used the words "creams") 19 year old me was naive to even look up these medications and just applied them. I had to go to the ER after stopping them in December because my face was burning so bad I couldn't sleep. ER gave me decadron (powerful internal steriod) to make the burning stop. ever since then the skin texture of my face no longer feels the way it felt before I seen this stupid PA derm. god I hate her. my face burns day in and day out. and my face feels tight when I close my eyes or raise my eyebrows (where I put the majority of the creams at) my nose folds were oozing about 3 months later, it felt like the nasal folds were detached from my face. and 7 months into this my entire face just has been on fire everyday non stop. I seen every doctor, no one knows and others say it's not tsw, so then why did this magically happen after using those stupid creams. I don't know how much longer I'll be burning for or better yet how much longer I can take this.

Okay I literally just made a post on here, but it TRIGGERED ME. I am about 2 months out of the hospital, and from the height of my TSW and while I'm still healing (and starting a new biologic tomorrow!) I just had memories come rushing back to me. I've tried not to give the negatives much thought, I'm so grateful I got through it, and honestly since I've been better I kind of can't remember most of it.

But holy shit did I just have a flash back. One of my lows was when one morning I woke up for school, and genuinely couldn't get out of bed. I didn't get ready that morning, I just laid there. Finally my father had come upstairs yelling, "why isn't your ass ready for school?!" And I just cried, "I can't" my father is an asshole, but he actually just stood there quietly, and then walked away. I got my mom to let me stay home, and I was home for a week. I only got up to go to the restroom, to eat a few times, and to go to a derm appointment. I could barely fucking move, I was in so much pain, and I had no energy. Surprisingly, THAT didn't send me to the hospital lol.

I also remember one time after an itch attack, I was in so much pain I thought I was on fire, I wobbled downstairs and waited for my mom to come out of her room. When she did I got up and gave her a hug crying, "mommy I can't do this anymore" "it hurts too bad"

Okay last memory. I was sitting in one of my classes, and my boyfriend sat next to me, and I don't know what it was, but I would twitch and shake a lot? I laid my head down on the table and he just held my hand while I twitched and I shook in pain. I still can't believe I showed up for school sometimes. I skipped a lot of classes, fell asleep in a lot of them, I carried a blanket around for a month because of the thermodysregulation.

I only went through the worst for about 3 months. That's a fraction of what some of you have suffered on here. We are such a strong community, and I hope others don't have to suffer, and then remember the memories on a random Monday night and start sobbing on the floor lol.

Thanks for reading, I wish you the best <3

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I'm six years into TSW and i'm experiencing a minor flare up right now... I'm wondering if wildfire smoke and poor air quality can influence a flareup. I'm in minnesota, and recently there have been a bunch of wildfires. I'm trying to limit going outside as much as possible. And I have an air purifier, but other than that, i'm not really sure what else to do ... Either way very frustrating :(

Hello all! I felt led to log back in to Reddit after years and hoping to give some encouragement. I began experiencing symptoms of TSW back in 2022 and it was the most excruciating experience of my life.
I didn’t think I was going to make it, I thought either my body was going to give out on me or I was going to take myself out. But the Lord met me in that pain and gave me hope. I prayed to God and said “if you want to keep me here, YOU have to keep me here” and I was led to Matthew 9:22 “Jesus turned and saw her. “Take heart, daughter,” he said, “your faith has healed you.” And the woman was healed at that moment.” And I held onto that verse for hope.

Now, 4 years later, I can say I am healed (mostly). Majority of my body/skin is healed. I still have some discoloration and areas that are basically back to the “normal” eczema I was experiencing before TSW on my inner elbows, neck, behind the knees and stomach. Right now I’m currently using Rinvoq (huge help in keeping flares at bay) and I used dupixent for about 6 months (hurt like crap but was a huge help in healing my skin) I used opzelura briefly (LOVED it; helped a lot with healing discoloration and textured skin) and there were a couple of times where I used topical steroids (for about a week after huge flares). Things have been steady. I’m not 100% healed but I’m healed enough that I can actually live my life without being burdened by the pain from TSW.

so if you’re reading this, I don’t know where you are in your journey but I hope that my testimony not only gives you hope in healing but also in the Lord Jesus because I can honestly say without Him I would not be here to be writing this to you all. YOU WILL HEAL IN JESUS’ NAME!🙏🏽🤍

if any of you have questions, need tips or advice, a listening ear, or prayer please don’t hesitate to reach out. TSW wont win! I love you guys, keep fighting the good fight of faith, you have the victory in Jesus!

Did your flare ups show up in places you used steroids on? Were they random?
How much did it spread?

(F23) I started using steroid creams when I was 13 for a few weeks on my elbows and scalp then stopped because my eczema "went away". I started reusing a couple of years later on the same spots for a few days then it went away too.
Then I started using on and off until now, sometimes once a year sometimes less.
I've been reusing creams consistently for the last 2 years on small spots (elbows, wrists, philtrum, ears).

Last winter it got worse and worse on my hands and philtrum, also the corners of my eyes and nipples. I once again stopped when winter ended. My eczema spread like crazy on my neck, shoulders, arms, hands, behind my knees and calfs, behind my ears too. I didn't use much creams because it didn't help at all.

I completely stopped 2 weeks ago. I did my research and changed my diet to no sugar, gluten, dairy, soy etc. I only eat non inflammatory foods, drink 3 liters of water a day. I avoid all triggering foods.
I started taking supplements (probiotics, vitamin D, l-histidine, zinc, collagen for elephant skin).

This week I've been waking up with a swollen face, especially my eyes and lips. My shoulders and neck feel tight and sting.
I moisturize with an emollient 3 times a day, I shower everyday with cold water. I want to try to shower less but I feel disgusting if I don't.
I feel hot and inflamed after taking a shower but feel great after my body calms down.
I apply sudocrem on my red spots, and reapply every few hours on my hands as they ooze sometimes.
I have dermatitis eczema, discoid eczema on my forearms and hands and every other spots are "classic eczema", just dry and itchy and red when I'm inflamed.
My eyes are getting more and more swollen every morning, it improves during the day but stay swollen still.
My philtrum started showing very small cracks, only visible when I stretch the skin but it still stings if I don't apply vaseline.
My forehead is so tight and dry.

I rarely scratch during the day and when I'm itchy I use cold compresses and ice cubes, also apply sudocrem. I cut my nails very short to minimize damage.
I scratch during the night, before falling asleep, during the night unconsciously and it wakes me up sometimes.

I've been feeling pretty doomed and worried about the process. I know it's still early days but it doesn't seem to get better.
I'm also trying to figure out what my triggers are, I'm still clueless about them. I just know I flare up when I sweat.

My questions are :

1. Is it topical steroids withdrawals or rebound?
2. Is it going to get worse and worse before getting better?
3. Do you have any advice, things I could introduce to my routine?
4. Should I get under the sun?
5. Is it too early to start red light therapy?
6. How do I know when something triggers me? Do I feel it immediately or the next few days?

I know it's all about patience and time but I want to speed up the process so bad...
I'm working on just accepting it all and be at peace with it, training myself mentally to convince my brain it's going to get better overtime.

Hi all!

A year and half ago I wrote a post about what worked vs not for me at two years.

https://www.reddit.com/r/TS_Withdrawal/s/WTDEvaEuDS

Now that I’m closing in on four years, I wanted to write the hope post I looked so desperately for when I was in the thick of it and share some advice from “the other side.”

You WILL look like yourself again! If you lost weight, you will gain it back.

There were many days and weeks where I thought it would never end and doubted that I’d ever get better. I wish I could see me now.

I spent a lot of time looking for the silver bullet and it took me 2 years to realize my focus should be on preventing infection and keeping myself comfortable. Sometimes that meant Advil and cannabis to sleep, sometimes that meant antibiotics.

Some well intentioned people in the TSW community will give advice that is not helpful. They’ll tell you what worked for them - they’ll tell you ”it’s fungal” or that you’re flaring because of something you ate or that they healed in 8 months and you’ll wonder if you’ve done something wrong. Pro tip: It’s likely not fungal (but nummular), your food sensitivities will pass (if you have any-I didn’t), and you’ve done nothing wrong! We’re all different.

Most importantly, whatever pain you’re in today will end. You may still have eczema at the end of TSW, but it does not even touch TSW. You will live a normal life. Your allergies/sensitivities will calm down. You will not be stuck in this hell forever. You will get through this and you will even forget about your skin most days & what the worst days felt like.

Happy to answer any questions. 💪🏻

Then vs now:

https://ibb.co/4ncF8NTS

https://ibb.co/4gYRsYbj

Trying to figure out what’s going on with me because I’m getting tired. Used steroids of various strengths all my life and I started seeing symptoms of steroid addiction early last year, but didn’t go fully into withdrawal until November 2025. Managed to stick it out for around 4 months before going onto dupixent around February this year. My loading dose was like a blessing, fully clear skin in only about a week. From then on, I feel like it’s slowly regressed. It went from fully clear skin to a few patches showing up around the day that I needed another fortnightly dose for a few months, and now I‘m really red and itchy across my whole body basically 24/7 again. I’m wondering if it could partly be due to weather, as for me it’s winter right now and the seasons changing lines up a bit too well with the path my skin took. Another thing I noticed is that a few days ago, I was really busy and running all over the place and was sweating loads, and my skin healed to essentially clear the day after, wonder if the heat or sweat from all that movement had something to do with it, or it could also be because I was out all day and it meant that I have allergens or irritants in my home. I’m also maybe suspecting I’ve gotten psoriasis now, as the rashes I’ve got now are extremely different to the ones I had when I was first starting dupixent (I’d describe those as having smooth transitions between the rashes and smooth skin, if that makes sense), and look really similar to psoriasis (my rashes are extremely splotchy and red). I really don’t know, I just need my skin to figure itself out asap because I have my finals coming up.

Hi everyone I wanted to start a once monthly support group for those of us struggling with TSW. This condition is so hard and support feels limited. Comment if you might be interested and I will see if it makes sense.

We will finally be getting official medical codes (ICD-10) for TSW next spring. That means doctors can formally diagnose it and researchers can actually count us so the word “rare” stops getting thrown around without evidence.

I put together some guidelines on how to prepare beforehand because the legal wave is expected after the codes land. You can also use this guide to support your disability and insurance claims.

Normally I would put something like this out there for free, but I’m currently bed bound and trying to raise funds to get out of a bad living situation. If you can’t afford to pay, please message me and I’ll respond when I can.

I hope this helps!

I'll make it brief.

Find an aloe Vera leaf at a reputable Asian grocers frozen or fresh.

Learn how to process it (drain, cut, harvest the gel. Wash it again and freeze into small cubes... Melt the cube in your hands and use it repeatedly on your skin). I also add it to smoothies and drink it!

The more interesting one. Arugula (Eruca sativa) seed oil. Found in Asian stores referred to in Indopak as Taramira oil. Now, when I was given this by the gentleman who gave it to me optimistically, I put it aside for a few days.

It's a very warm oil and can be stringent. After 15 minutes of a very light application.. my itchy areas are no longer itchy. The oil is apparently also antibacterial and antifungal... And it has fatty acids and all sorts of other goodness. It has a strong rocket leaf like scent but this doesn't bother me. I think it is more effective on healing skin rather than really bad flared up open skin.

I couldn't stretch my arms out because of my eczema.. since using this oil I have found my mobility has improved!

Use it sparingly and test it. Some discomfort and heat is expected. Dilute it if you prefer to start small.

Well... The title says it all. My dermatologist didn't share my optimism when I said I wanted to go cold turkey without a plan for dupixent.

1 month I am at 150mg (25mg taper every 3 wks...)

What else is there to expect?

Has anyone gone back to steroid creams once their TSW has healed?

My TSW healed on most of my body but I still have a spot on my foot. I'm tempted to just use steroid cream for the time being before I start on cyclosporine in a couple weeks. The pain is just preventing me from being able to even walk about.

Is full recovery possible from adrenal insufficiency caused by years of steroid use (oral and topical)?

I've joined a few adrenal support groups, and people there keep saying that recovery is possible but very rare. It's left me feeling very discouraged.

I started dupixent July last year and it literally is not working at all it’s supposed to work for asthma as well but if I miss a dose of my usual asthma medication it literally comes right back

They put me back on cyclo so I will be on it for 2 years now but I have no clue what to do after since my skin will just go back to being bad and my derm keeps dismissing the fact that the dupixent is clearly not working

I’m literally supposed to start uni in September

I was fine with tsw on my body, but today I woke up with red spots on my genital and now I’m miserable, I’m too afraid to put anything on it

Has anyone had a biopsy if so what did it show up as just eczema / atopic dermatitis?????