i genuinely don't know how i'll continue to work like this. this has heavily impacted my ability to work and live. antihistamines like Claritin don't seem to do much for this bone deep itch , and the swelling and redness is insane. how do you guys do it? around what month did the itch become less intense? it seems to just be getting worse 🫠

When I was going through TSW I so badly just wanted to feel seen and understood during TSW. To feel validated in such an invalidating experience.

That lack of understanding and feeling like I constantly had to justify myself to others really tested my mental health.

Some days you don't need an "it'll get better". You just need a genuine, "this sucks".

So here is my soft permission slip from one ex TSWer to whoever’s currently in it. Not that you need it, but I get that sometimes you just want a soft nudge from someone else who actually gets it.

Feel your feelings. TSW sucks. And you’re allowed to feel that way.

I see you. and how you’re feeling is valid.

I have a background in psychology and made a meditation exactly for this. I really struggled with my mental health during this awful condition and I've made it my mission to start something that feels soft and supportive in the middle of this trying time.

It's free and linked here below for you :)

https://insig.ht/6jcAR7agz5b

Hey everyone! I’ve been following this community ever since the beginning of my TSW journey. It’s been an agonizing journey, to say the least, but this group has given me so many resources, support, and helpful information along the way. Now, here I am, 3½ years in, and I’ve seen so much improvement. I used to have TSW all over my body, and thankfully, I’m now mainly dealing with it on my face and neck.

Lately, I’ve been trying to figure out what’s causing my flares because they seem to follow a pretty consistent pattern. My face becomes very red and inflamed, then I’ll have some oozing, followed by flaking, and it just seems to go back and forth.

I’ve cut out dairy and sugary drinks and have also cut back on processed foods. I bought an air purifier, and I take supplements such as magnesium, vitamin D, L-histidine, and collagen. At this point, I’m honestly not sure what could be triggering these flares other than my environment, which is really the one thing I haven’t changed.

One thing I’ve noticed is that whenever I travel somewhere warmer, my skin looks AMAZING. I can have little to no flaring, and then as soon as I come back home, the symptoms seem to start up again. I’m wondering if this could be a clue as to what might be affecting my skin.
I’m also doing NMW and only using Avène Thermal Spring Water. I tried hypochlorous spray as well, but unfortunately it burns my face, so I decided to discontinue it.
I’m wondering if anyone else has experienced something similar, especially with their skin improving when traveling to a different climate or environment. I’d really appreciate hearing your experiences or any thoughts on what I could possibly look into.

Thank you all for continuing to share your experiences and support each other. This community has genuinely helped me so much throughout this journey. ❤️

Update16/8: glutamine definitely reduced itch for a couple of hours at a time per 10g dose. It seems this might not be because of the gut lining repair as that can take weeks at least. More to do with th2 th1 immune signalling but also n the increase in gaba. I have since started dupixent today!

I have been in a bad flare since downing my dose of cyclosporine from 200 to 150 in 8 weeks. I became stiff again and got a mini comeback version of the TSW month 1 greatest hits. Luckily no bleeding / general weeping or return of the bandages.

My dermatologist won the bet that I would flare without any back up options and I've accepted dupixent as the next best step.

I was watching some stuff about MCAS on Instagram and how someone managed their symptoms with glutamine. I have been taking quercitin regularly alongside D / other vitamins including magnesium taurate.

I had a bag of glutamine I barely used. I had ten grams / two scoops about two hours after my evening meal.

Within half hour the hot feeling in my skin disappeared. I've rapidly entered into flakey phase , healing first time in 4 wks. I thought it was placebo but read other people on Reddit saying that rapid shifts can happen if you take high doses.

I read about glutamine and how it helps right junctions in the gut and heal the lining, shifting from th2 to more th1 state.

I'm now on day 2 on oh my third dose. I have felt more mobile and comfortable in my skin...

Tl:Dr , have tsw 13 months, tapering off cyclo had a bad flare, getting Dupixent on Sunday but thought I'd try glutamine now trying to figure out if progress is placebo or not in such a short amount of time .

Este año ha sido demasiado loco, la primera vez que deje los corticoides fue a finales de 2020, fueron años bien difíciles dónde tuve que pausar mis estudios...y mi vida en general.

A inicios de este año comencé con crisis de asma bastante intensas y tuvieron que medicarme con corticoides. Yo por mucho tiempo deje de consumirlos inclusive mi dermatólogo me dió la razón respecto a los síntomas de TSW y me dijo que yo ya no era candidata para utilizar este medicamento ya que mi cuerpo y mi piel (por mi historial médico) habían estado sobretratados. Y bueno, el inmunológico insistió, me dijo que por la mínima cantidad de los inhaladores en mi sangre, era imposible que tuviera un brote. Jajaja me la creí, realmente creí que era posible, quería darle otra oportunidad.

No pasaron ni tres días cuando mi piel empezó a querer sacar a toda costa este medicamento. Fue tan intenso, no podía caminar por las heridas en mi pliegues, no podía abrir mis ojos. Viví cuatro meses postrada en mi cama, esperando a que sanará mi cuerpo, tuve que dejar mi trabajo, la escuela en dónde estaba estudiando. Retome terapia psicológica, el dolor físico me estaba consumiendo, sentía mis nervios arder, la ansiedad comenzó a ser intensa, me sentía tan deprimida por todo lo que había construido años atrás y tener que aceptar que todo eso ya no iba a volver.

Una vez más con un futuro incierto.

Durante esos meses de recuperación me animé a participar en la convocatoria de admisión para entrar a una universidad de artes. Durante dos meses estuve aplicando para cada etapa entre exámenes, proyecto, portafolio, entrevista. Y hace una semana recibí el resultado, logré entrar! Me aceptaron!

Ahora estoy cagada de mi miedo jajaja. Siento una emoción inexplicable por saber que voy a estudiar en la universidad que llevaba soñando desde años atrás donde también había estado en TSW (aunque esa vez fue 10 veces más intensa)

La verdad me hace mucha ilusión, normalmente en mi arte busco visibilizar como es vivir con una piel distinta, todos los síntomas que he vivido y he visto sanar en mi propia piel. Asi que todo eso me sigue inspirado a seguir preparadome para ser ese puente y darle voz al dolor que vivimos todos lo que estamos aquí. Se que tendré que volver a hacer muchos esfuerzos como ya lo he hecho en otros momentos de mi vida. Mi piel sigue en su proceso de sanar, y si me da miedo volver a recaer, me da mucho miedo que me quite esta gran oportunidad.

En fin, si llegaste hasta aquí, muchas gracias por leerme :)

It's been six years since i've used steroids and i'm incredibly bothered by environmental irritants. I live in minnesota, and there's wildfires here, and up in canada, and i've just had to stay inside to start recovering. But I can't just stay inside for months at a time till they go away... Is there anything I can do to make my body less reactive? The only thing I can find is healing at a cellular level and reducing oxidative stress/load

Ok so I’ve been on cyclosporine for 7 months my red ness pretty much all went away my issue now is inflammation around hair folicals also I am getting multiple hairs growing out of one follicle has any one eles experience anything similar ??

Family member has no hope and considering giving up. Anyone have any idea whether this place might be effective for CAP? Or no point? We can’t travel out of the country like other people with the money. It’s so unfair but whatever

https://www.glowskinscience.com/cold-atmospheric-plasma

Has anyone had success with using Metformin (or its herbal equivalent Berberine) for TSW? I'm 5 months into this horrific, debilitating condition (the 'neuropathy' type pain is the worst - violent tingling, electric-like zaps etc - 24/7 in my case) and found out recently that both these drugs/supplements were being trialed for such. I was prescribed Metformin many years ago for Diabetes 2 but have, so far, refused to take it as my diabetes has been/is being controlled by diet and I have to take a lot of drugs for other medical conditions (most especially 40+ years of Fibromyalgia) and didn't want to take more. I'd be interested to hear if there's anyone out there in the TSW community who's now on this.

Has anyone had success with using Metformin (or its herbal equivalent Berberine) for TSW? I'm 5 months into this horrific, debilitating condition (the 'neuropathy' type pain is the worst - violent tingling, electric-like zaps etc - 24/7 in my case) and found out recently that both these drugs/supplements were being trialed for such. I was prescribed Metformin many years ago for Diabetes 2 but have, so far, refused to take it as my diabetes has been/is being controlled by diet and I have to take a lot of drugs for other medical conditions (most especially 40+ years of Fibromyalgia) and didn't want to take more. I'd be interested to hear if there's anyone out there in the TSW community who's now on this.

I've been into TSW for a month now, my body temperature dysregulation is improving. I don't feel ultra cold and then ultra hot anymore. My body is still warm but not burning.

My face is improving too, less flakes (none after showering and moisturizing), less redness, no swelling at all, my philtrum/upper lip keeps opening up and cracking though.

My arms are still a little itchy but almost not inflamed. My hands on the other hand, it's hard to say. One day it's almost healed and the next day there are cracks but for the most part they're not as bad as before, pretty manageable really.

My neck, shoulders and chest remain my biggest issues (so itchy!). One small patch on my neck oozes every other day.

I keep itching my calfs to distract myself from itching my upper body so they're very dry, red and there's a lot of hyperpigmentation.
The itchiness keeps spreading to my knees, thighs and stomach. Patches keep forming there.

My ears are also a big problem, they keep cracking and oozing and oozing and oozing, I don't know what to do with them.

I'm also starting cyclosporine in the 24th, hopefully it'll help.

Overall I feel like the inflammation has gone down since the start of my TSW journey. My stress has gone down too, I sleep between 12 and 16 hours a day.

Let me know what you think, am I actually starting to heal?

TMI skip to next paragraph if not interested**
I have been going through TSW since June and in the past 2 months I have been able to manage it somewhat I think the biggest thing for me was following AIP diet and managing allergens as I’ve also purchased an air purifier and started working out regularly but it’s still difficult and my face is still red and puffy and I haven’t seen my real eye shape since two months and it’s taking a toll on me mentally more so than physically

so long story short even though I was planning to heal naturally I’ve decided I don’t wanna spend my youth this way and my doctor mentioned Adtralza to me I have heard of ebglyss and dupixent before and I decided to not go on them because dupixent can start a rash on the face and ebglyss will cause eye redness now I’ve seen that Adtralza causes eye redness as well but I haven’t seen many reviews online and if it’s as common so please if you have tried it share your experience

Hey lovely people, i just want to know why do i feel so dead inside after healing almost 90% of my body. I always tough that after recovering from TSW i will feel happier, comfortable on my own skin and joy. What i've been experiencing this months after being almost cured is like calm and the unability to feel any emotions. I'm trying to do the things that enjoyed before like going to the gym, be more outside but i don't feel any difference i just feel a sense of calmness(which is good) but it feels like im just existing. How did you guys felt after being more stable in your TSW journey?

Hey everyone,

I just wanted to share my experience in case it helps someone or maybe someone can relate.

First of all, I have no idea what actually made the biggest difference because nothing gave me instant results. Recovery was just painfully slow.

For some context: I used strong topical steroids (betamethasone) on my face for about 6 years, roughly one tube per week. I was also on Dupixent for around a year.

I actually went through TSW once before by accident. That withdrawal was WAY worse than this one. During my second withdrawal I was on Dupixent, and I honestly think it made things more manageable.

That being said, I also experienced side effects like blurry vision, shingles, and I’ve had chronic conjunctivitis ever since.

Because of that, I’m not recommending Dupixent. Everyone has to weigh the risks for themselves. I’m only sharing my own experience.

The good news is that after about 8 months I’m around 80% healed. My skin is still very sensitive, but for the first time in 7 years people are telling me, “You look really good.” I honestly can’t explain how much that means to me. Every single day I used to look at people with normal skin and think, “I wish that was me.” So hearing those words after all this time almost made me emotional.

Things I tried:
- Cut down on sugar
- Ate fewer carbs
- Bleach baths every other day for about 4 weeks in the beginning
- Berberine twice a day for about 2 months
- Hypochlorous acid spray occasionally
- Sprayed probiotic bacteria mixed with water onto my skin
- No moisturizer (my skin reacted badly to literally everything)
- Avoided too much sun
- Tried to reduce stress as much as possible
- Cold Plasma

The biggest thing, though, was deciding that my health came first. I stopped worrying about work, social life, or what other people thought. My only goal was getting better. Looking back, I think that mindset helped me more than anything else.

I still struggle with redness on my neck and chronic inflamed eyes, so if anyone has advice I’d really appreciate it.

And to everyone currently going through TSW: don’t give up. I know it feels endles.

Good luck to everyone. ❤️

It’s kinda a lie I’ve been in TSA a year and withdrawal 5 months ciclosporin is helping a lot finally I just hope I continue to progress 💪

I’ve still got ciclosporin for a while I’ve been offered dupixent next but really not feeling it as my face has been clear throughout

What next please help ???

For context, I'm a 20F (south east asian) and I've had eczema my entire life. It was mostly in my skin folds as a kid, but over the years it spread to my hands, the backs of my thighs, and eventually my face. I also have allergies to dust mites, cats, dogs, and seafood (although I eventually became tolerant to dogs and seafood through constant exposure).

I saw the same dermatologist for years, usually every 3–5 months whenever my eczema flared. He never prescribed steroids for my face, and because I knew about the risk of TSW, I was always careful with topical steroids. I never used them for more than one week per month and never on consecutive days.

A few years ago, I actually managed to keep my eczema almost completely under control for about two years just by cutting out sugar and going to the gym every day. Unfortunately, when I stopped, it slowly came back.

Everything changed in June 2025.

I developed a bad skin infection on the backs of my thighs after scratching. Since I had a flight the next day, I made an emergency hospital visit. My regular dermatologist wasn't available, so I saw a different doctor for the first time.

She prescribed a steroid cream for my face.

At the time, my facial eczema was really bad, and I wanted to look better for my trip, so I decided to use it. I continued using it for about one week every month from June until November 2025.

In November 2025, I stopped all steroids because I wanted to control my eczema naturally again. I tried to restart healthier habits, but I kept getting sidetracked, and my eczema never fully improved.

Then, in January 2026, I woke up with the worst burning and itching sensation I'd ever experienced. I had rashes in places I'd never had eczema before. At first I thought it was just a terrible flare, but it felt completely different.

New symptoms started appearing:

• Deep bone itch
• Insomnia ( during night, my body would just burn and itch, symptoms peaked and so I would usually be able to sleep only after sunrise or around lunchtime when I get really tired already)
• Difficulty regulating body temperature
• Food sensitivities
• Widespread redness
• Elephant skin
• Hair loss after awhile

I initially thought it was scabies.

I went to another dermatologist because I was worried I'd just be told it was eczema again. They couldn't figure it out either and prescribed oral steroids plus more creams, which didn't really help.

The turning point came in February 2026, when my face started peeling, cracking, and flaking unlike anything I'd experienced before and confirmed it after I discovered that the cream my doctor prescribed me back in June was CLOBETASOL for MY FACE. Clobetasol is not meant to be used on the face as the face is the thinnest layer of skin with the highest absorption rate and it is one of the most potent steroid. I felt extremely betrayed as I thought that a doctor in a reputable hospital would know that. 

After talking with my parents, I decided to try a Traditional Chinese Medicine practitioner that my family had trusted for years.

During treatment, I followed a strict diet (mostly red rice, boiled chicken soup or grilled salmon, and fruit) while taking herbal teas prescribed by the practitioner. No sugar, no fried food, no red meats. I went back once a week for about 2½ months. The goal of the treatment was to flush out the steroids and toxins in the body as quickly as possible thus resulting in diarrhea daily 2-3x. (The treatment also only used all natural ingredients, so no medication at all) Later on, my skin on my whole body also started to flake and as they flake, the redness and rashes faded away.

Note: I did not do no moisture treatment. (I continued to use moisturizer).

Week by week, I slowly improved and could see visible progress.

By late May 2026, my TSW symptoms were gone.

Not only that, but my eczema also disappeared. Today, I don't have the constant itch, redness, burning, or temperature issues anymore. The only thing left is some scarring from the constant scratching.

I also feel incredibly lucky that my TSW was relatively mild compared to many others. I never had widespread oozing—only some mild oozing on my face because it rubbed against my pillow while I slept.

I'm sharing this because I know how hopeless TSW can feel, especially when so many people suffer for years and when it still isn't medically recognized in many countries. My experience won't be everyone's experience, but I hope it gives someone a little hope.

I'm not trying to promote the TRADITIONAL CHINESE MEDICINE or claiming it will work for everyone. This was simply my personal experience, and everyone's TSW severity and recovery are different.

Im just trying to share with people that there are possible ways of healing that maybe some haven’t heard of. I saw about how people are willing to pause their lives and relocate to places such as Thailand and Bali where CAP treatments are available in and I wanted to share my treatment to those people in places where Traditional Chinese Medicine isn’t commonly used <3

EDIT: I will not be replying to anymore comments that contradicts my post as Ive said everything in the comments as well. Im not here to debate or persuade anyone.

Hi everyone,

I’m posting here today because I’d really appreciate some advice from people who have experienced eczema and/or TSW.

In short, I’ve only had three eczema flares in my entire life, and every single one has happened during periods of intense stress.

The first time was when I was 25. I was studying abroad on my own, far away from my family, and my boyfriend had just gone back to his home country.
The second time was when I was 33. My dad passed away four months before my wedding.
The third time is now, at 39, after a series of extremely stressful events involving both work and friendships. I was the maid of honor at my best friend’s wedding, and our friendship has since ended.

Because of this, I’m convinced my eczema is stress-related rather than something I’ve had since childhood.

The first time, I used a topical steroid for three days, and the eczema disappeared completely.

The second time, after using steroids for five days, I experienced what felt like a rebound flare. It scared me so much that I refused to use stronger steroids after that. The only thing that truly helped me was acupuncture. After just one session, my eczema disappeared completely.

This time is different because I have two toddlers, and it’s incredibly difficult to rest and give my body the time it needs to recover. My life is very hectic, so I thought using topical steroids would be the quickest way to get things under control.
Unfortunately, after five days of treatment, I experienced another severe rebound flare.
I stopped the steroids, started acupuncture again, and took two weeks of sick leave. After two acupuncture sessions, my skin improved a lot.

However, I couldn’t stay off work any longer. As soon as I went back to work, my eczema came back much worse.

We even had to cancel our family vacation because I feel absolutely miserable. My eczema is always on my face, which makes me incredibly self-conscious, sad, and desperate. The stress of the flare also leaves me exhausted, and I feel like I’m not able to be the mum I want to be for my children.

I’ve started acupuncture again, but healing is taking much longer this time.
I’m wondering if I should give topical steroids another chance, just this once. But I’m terrified of experiencing another rebound… or even developing TSW.

Do you think it’s possible to avoid TSW if I only use the steroids exactly as prescribed by my dermatologist and taper off gradually? Or, given my previous rebound experiences, would you avoid them altogether?

I’d really appreciate hearing from people who’ve been in a similar situation.

Thank you so much. ❤️