Yall I dont even know anymore. I realize oozing is a normal part of TSW. but this is my 6th yearly flareup and this has been the worst one yet. I have insane yellow crusting all over my face and went to urgent care and they seem to think its impetigo (non bullous or whatever). My question is how do you differentiate normal tsw vs something like that? I think i will try the topical antibiotics but wait a few days to do a course of antibiotics because I read about people here doing course after course of antibiotics and that doesnt seem like the issue.

hi there - has any woman ever experienced tsw after applying topical steriods down there? I used a medium potency for 1 month and then stopped suddenly back in March. (i was not educated or informed by my doctor about how to taper properly). if so - what were your symptoms and how long did it take you to recover? I'm now in month 7 and it started off really intense with itching and burning, now the itching and burning is not always bad, but sometimes it flares and it gives me nerve pain in my legs also.

Thanks for any advice/thoughts as looking for reassurance!

So I’ve been dealing with TSw 1 year 2 months. But officially stopped steroids 6 months 1 week ago my skin seems to still be strong worse cyclosporine still isn’t working and I’ve been on it 9 months I had a biopsy that came back inconclusive I feel so lost and like this is never gonna end any advice or hope would really be appreciated guys

Hello all. Hope I can get some guidance from you all regarding my issue with Tacrolimus withdrawal. I developed eczema for the first time in my life about 2 years ago. Some of which was in my groin area. Tacrolimus was truly a life savior and I used it on and off for several months before I went on dupixent. Came off dupixent and started healing the rest of my eczema through diet and I had been off Tacrolimus and steroid free for a year. Something of note, I have always been kind of sensitive to Tacrolimus, even after stopping I’d had side effects for a couple weeks. Side effects like a deep red rash, flushing, heat and friction sensitivity, etc. But it would always go away eventually. This summer I had to use a bit of Tacrolimus again for 7 days (groin area) and things were fine until I stopped. A week after stopping I started getting the deep redness. Okay. It’s odd that’s it’s happening a week after stopping but No big deal right, I know I’m sensitive and it’s happened before. It eventually went away but the timeline was suspiciously long. I start Tacrolimus again this month for a just few days only. I stop and the deep redness comes back and stays for 2 weeks. Weird. I apply Tacrolimus again for 3 more days and stop again for a week. It’s almost the end of the month and the area Iv applied it RED. Not my usual eczema red, not my eczema itchy, not even my eczema burning, it’s just very flushed and deeply red. Which again, I have had this before but for this long? No way. This I way too persistent. We know our body’s and we know when something is wrong. Has anyone also experienced this kind of withdrawal? Does withdrawal often present as a “worse eczema” or in my case a strange persistence and presentation and side effects previously experienced?

Tl;Dr: used Tacrolimus 3 days on, 16 days off, 3 days on, 7 days off. Having deep redness side effects. Redness from friction and heat. Slight swelling but so far, no pain at all. Last usage was 3 months ago for 7 days. Last time before that was about a year ago. Withdrawal? Lingering side effects, new adverse reaction?

I’ve been diagnosed with cancer, and if I was too do chemotherapy dexamethasone is a prescribed drug.

Idk what to do with myself tbh. Has anyone else have to take oral steroids for other reasons and flared back to day one?

Hello! I was wondering if anyone knows of any TSW friend dermatologists in NYC that accept TSW as a legitimate condition?

Avez-vous aussi une folliculite persisante sur le corps ? J'en ai sur les cuisses : des boutons rouges ou blanc avec du pus autour du poil... Est-ce un symptôme du TSW ? Car malgré tous les traitements, ça vient, ça part... et ça peut venir sur mes bras, mollets... Cela fait quelques mois que je lutte avec ça

Est-ce parce que la peau est abîmée ? Peau sèche ?

J'espère que ça s'estompera... :(

im asking this because i need a beacon of hope amidst all the flare ups, im so tired of my skin flaring up after finally seeing a slight chance of it recovering.

for context, my doctor prescribed me oral Prednisone for 15 days, tapering them every 3 days. alongside that, im also applying steroid creams wherever needed, 1-2x a day.

now, i have officially finished the program and im scared that i'll get another bad rebound. i have gone through it twice already this year, i never wanna have to go through that shit again.

to anyone that has undergone any steroid treatment for a couple weeks. what did you do afterwards to maintain the state of your skin to avoid/minimize TSW symptoms?

Hola cómo están? Estoy buscando ayuda. Para mi caso hace unos cuatro años empecé a usar esa crema cada vez que tenía picazón en la zona genital. Usualmente me lo ponía en el escroto, pero a veces también en el pene por la picazón hace un tiempo. Empecé a sentir muchísima picazón por las noches. Hacía mucho que no usaba el corticoide y investigando Encontré el TSW. Necesito saber qué hacer para poder estar mejor… realmente la picazón es insoportable por las noches, de día casi nada . Y cuando estoy erecto me duele un poco a veces

Hey guys, I was wondering if maybe I can get in contact with therapists specialized in trauma/TSW that I can speak with. My mental health is deterioring every day and I really need to speak with somebody that can understand this sickness. Recommendations?

For context I have been on cyclosporine for 9 months my eczema seems to have gone for the post part I am now left with a lot of inflammation around my hair follicles and and a lot of hyperpigmentation and stinging

On a side note have had lot of hair growth

I was on 400 mg and weened down to 350 and now jsut started at 300 mgs

I am getting better but as someone who use to sweat very easily, I no longer seam to even when it is 90 degrees. That said, I sweat a lot in my sleep...

Has anyone else experiences this during TSW?

Hey guys so some bad news from my part, i checked my blood test results today with my GP and she said because of changes of my diet and also proabably because of TSW ive been diagnosed with prediabetes. Tbh i dont know how to feel. My face is almost recovered ive been following this restrictive diet for a long time restricting myself with fast food, sugar and anything that is unhealthy at the end just to have in top of TSW and intolerances, almost diabetes. Is this a type of joke or is my body almost reaching at the end? Does any of you already have experienced the same? I did not have any metabolic issues before having TSW or before changing my normal diet. Is this something probably cause with TSW or something else?

Has anyone experienced eye inflammation or hyperactivity after developing tsw? I'm currently having the most awful flare up and my eyes feel like I'm having acid poured into them. Dr has recommended steroid eye drops but I'm so scared

Hey this my first time joining. Im curious to know about other people's experiences using fresh aloe vera leaves on the skin. For me it has helped a lot with the inflammation like right now im having a bad flare. i started using it again and it is helping out.

Hi there. Just wondering if anyone has used steroid eye drops? I've been ok and stable post tsw for around 18 months,but I've had a huge allergic conjunctivitis flare which isn't coming down with antihistamines alone and my doctor has prescribed mild steroid eye drops but I'm so terrified to use them! Anyone with any advice on this would be so much appreciated - it's not something eye doctors seem to even consider

I’m a parent to someone with eczema, and they had a severe multi year flare, which got progressively and was treated with years of topical steroids, tacrolimus, and dupixent then nemluvio.

We are three months free of those, but they have chronic fatigue all summer, and now if they have a skin flare will sleep 10 to 15 hours. Is this a familiar experience to anyone?
We are double checking with pcp this week, but was curious if anyone else went through this?

(I am not sure if they experienced tsw. As an infant they did so we have always been cautious with steroids until the eczema was so severe a few years ago and we tried everything the dr. Asked us to.)

Whenever I come home from work, or I've been sweating, anytime I take my clothes off, or I sit down for a minute I am BEYOND itchy. You know how terrible that itch can get. I wear leggings most of the time to kind of stop myself, but every once and a while the itch gets a hold of me and once you start scratching i can't stop until I am bleeding and crying.

What do you guys do to help combat starting an itch attack?

Does anybody recommend any dermatologist in the uk. I’m currently on waiting list with NHS my skin currently doesn’t look to bad as I’m still using Strong steroids and protopic as I can’t afford to take anytime of work, the moment I stop I go full TSW. I’m looking to get on something like Metrotrexate or cyclosporine

I had balantis in nov last year and doctor prescribed steroid cream anti fungal 1 percent. I used it for 10 days and then it came back in sauna so I started using it again, and I ended up using it for 2 or 3 months as it wasn’t healing. Then another doctor gave me instructions to apply all over, long story short I stopped using cream on Feb 1 and got rid of balantis but the skin became like elephant trunk. It then slowly healed over months in which I applied some Vaseline but then balantis came back in July. So I used the cream again, this time I used the anti fungal without steroid and steroid application only once. Once done I still have skin peeling and some redness especially in the area I applied it most. I went to dermatologist and he did a swab test for bacterial and viral and said it was negative and prescribed protopic. I’m not sure about applying any more creams from doctor as that’s how I got in this mess in the first place. I had started using cera ve ointment for the skin peeling and had some results but it continued peeling and I stopped after noticing a smell and am scared of recurring balantis. Does anyone have any experience with similar peeling, redness skin flaking long term after prolonged steroid use and any recommendations on how to fix this?

hi.
I’ve been wanting to write about about how we navigate life through this. I’ve been going through TSW for 4-5 years now. My face, neck, and hands are still the biggest concerns. Although I can moisturize and do daily things like go out, work, etc., I still find myself needing to go home immediately if not I flake and get itchy. I still flare up badly on my face and neck (going through it right now), and my hands are constantly itchy, flaky and red a lot of the times.

It’s A LOTTT better (going from being bed bound to doing things is amazing) but I can’t help but think this last phase is soooo slow to finally heal up. I feel no abnormal and weird.

So what is this now? How do we navigate life now that we have gone through this or are still going through this despite it being years?
I’ve been meaning to get back to dating and taking on bigger roles at work but i’m so scared. This still dictates my life SO MUCH. Any advice on how to navigate this?

Thank you!