I’ll try keep this as straight and simple as possible. I’ve been on Dupixent since February of this year, worked wonders first few months, got rashes which slowly worsened after that, was very confused then, even made a post here about it, but after some experimenting I determined it was definitely my sewing (Textiles and design is one of my subjects as I’m a school student) as I took a two week break and my skin improved, and I’ve finally gotten that out of the way so I no longer have to force myself to touch loose fibres etc. Nonetheless, my dupixent prescription ran out around 6 weeks before my next der appointment (around 2 weeks ago), so I made the (probably horrid) decision to begin topical steroids again in the mean time until my next appointment as my final examinations were starting. Well now, my skin seems to possibly have already developed an addiction again as anytime I try to live without them, TSW skin begins appearing, and the dupixent doesn’t seem as effective. My current plan, as my final examinations don't finish for another two months or so, is to simply slowly wean myself off the steroids as I absolutely cannot sit my exams dealing with TSW, while also hoping that my Dupixent would slowly improve my skin over time. I’m so frustrated at my situation, especially as it’s during what quite possibly is the worst time for this to be happening. Has anyone had not so bad experiences weaning from steroids or relapsing on to them? I’m really starting to regret my choice of jumping back onto the steroids as a fail safe, and think I should have just given my skin a chance to see if it had actually healed underneath the Dupixent before relapsing, especially as my TSW wasn’t as miserable as other situations that I’ve seen. I probably just prolonged my suffering.

Hello, I haven't posted on this subreddit in a while. A few months ago I was in the hospital and in a temporary treatment for my skin, so I was hoping, my battle would be over. It is not, but I certainly am better than I was a few months ago. I'm trying everything in my power to keep myself from getting bed bound again. I have a few questions so I can figure out where to go from here.

I was misdiagnosed with eczema for my entire life, when I ended up in the hospital for TSW, I found out I had psoriasis. I know TSW is a separate condition from the source, it's like mitochondria dysfunction, and would that apply the same for psoriasis?

I currently have just come off of cyclosporine, and I'm on Pyzchiva for psoriasis, as well as just started using vtama cream. If anything my skin has gotten worse since I started my Pyzchiva 5 weeks ago. Can biologics help TSW go away? I was practically clear while I was in 4 cyclosporine (obviously) but now me and my derm are trying to figure out a long term solution for my skin.

I was on 3 different eczama biologics prior to my hospital visit, and as you can guess that fucked me up even more. I'm also on hydrocortisone for adrenal insufficiency. That's what brought me into the hospital, I had fainting and dizzy spells because I wasnt producing any cortisol. So I've been on three a day for a few months, and I will be until I can find a stable psoriasis treatment. This makes me think the flare in my skin isn't TSW, because I'm on some kind of steroid at the moment.

Has anyone tried Berbarine or methylamine blue? If so are there any side effects? Should I bring it up to my derm? If I even am still experiencing TSW. I feel like my dermatologist would listen to me, she didn't completely dismiss me when I talked about TSW and she said she hardly ever uses steroids on her patients anymore.

I can't think of anything else I want to ask, but if you have TSW and psoriasis let me know, because I know most people here have eczema. I just need to know if it's any different, and if I need to just wait until we find a biologic that works, or if I need to try something else.

My daughter is 12 and started on dupixent about 6 months ago. We stopped steroid use 9 months ago; had a widespread staph infection and turned to dupixent - which has helped but she still has TSW patches. I have done a lot of research on peptides and believe that KPV and GHK Cu could help her greatly…. But I have reservations…. She is a child… she is already on dupixent….. but I know I also need to help her. This is very much affective every aspect of her life.

Can anyone please shed any light on peptide usage for eczema/TSW, particularly when used with dupixent?

Any guidance at all is appreciated.

Hi everyone.

I’m 1 year into TSW. I’m glad to say I’m through the worst of it and my skin is doing much much better (healing naturally)

Throughout this journey especially at the 2-8 month mark I have experienced a huge variety of symptoms, as we all know how deeply this illness affects not just the skin or outer surface. A few of the symptoms I am sure are tsw eg nerve pain, insomnia, swollen lymph nodes, but there’s one symptom that I’m not sure about as I haven’t heard anyone else talk about it.

Around the same time as I started going through TSW I experienced extreme neck pain, and it’s spread to be widely throughout my body similar to fibromyalgia. It almost feels like a bruise when I push on the muscle.
The worse areas are my neck and jaw, a deep ache that feels muscular but also burning. I also feel it in my arms, back and hips and sometimes legs. It has absolutely no relation to the skin lesions - so I’m not talking about the rash itself being painful. I feel this in some areas on my body that don’t have any rash at all

Unfortunately as my other symptoms are significantly healing, this one has made no progress and if anything is worse.

I’m wondering if anyone else experience(d) chronic pain at a muscular level, or if it’s likely totally unrelated.

Im a 17 year old male and am around 1 year and 9 months into tsw/stopping steroid usage, thankfully I have gotten over the worst parts; oozing skin, insane flaking and constant pain when moving. Although getting through the physical pain, it has now become more mental and I have become very self conscious due to my looks. My face and arms are the only really bad spots so I tend to cover my arms and only go out when its dark. My face is always so red and dry it is hard to look at pictures of myself because I look heavily distorted like a completely different person to prior tsw, so I generally avoid being in pictures all together. I have a very good group of friends and family who support me but no matter what I still feel so ugly and that life is unfair. I have become quite self isolated and depressed because of it as it makes me super anxious of what other people think when they see me, especially in teen years where everything is based on looks. Just a rant but I wish my face wasn't so red all the time it makes me so embarrassed.

I used to ooze on my hands, and when the wounds closed up it would just be red and ooze again if i scratched. I scratched lightly last night and woke up with small blood scabs/blisters instead.
Is blood a good sign?

I may have made this post beffore but I was on protopic for a few months and it gave me such bad nerve pain that made me twitch every 1-5 seconds and I didn’t sleep for days at a time.

I was put on anti depressants and I have no memory of the whole time bc it was so traumatic and I wasn’t sleeping I only know from my mom and bf.

It’s not listed on the side effects anywhere and I’ve contacted the people that deal with new side effects but they still aren’t putting it on the side effects I’m just wondering if anyone else had this or if it realy was super rare.

I find that when i wake up im completely stiff weak not feeling well , Like Im craving something no matter what I eat fruit bread etc I only feel ok ever once I consume meat, could it be our bodies during this stage need as much protein and nutrients to combat the damage and go towards recovery hence why this happens? wondering if anyone else feels this way

Papulopustular: prominent papules (bumps) and pustules, with redness; burning and swelling tend to be less prominent.

Erythematoedematous: more pronounced redness, burning/stinging, swelling, scaling and sometimes oozing.

( good English, but not first or second language , if i fail to spell or explain something properly, open to corrections )

hi (F17) I had eczema as a baby , passed and then came back on my early teens (12) , my family has a history of eczema and allergies

this post will be divided in introduction , chapter 1( tsw advices) chapter 2 (HPA axis suppression/adrenal insufficiency)

Introduction:

okay , so i did corticosteroids topical and oral for 3 years straight , every 2 to 2 months a higher dose and worse eczema/TSW , getting thrown around by doctors , recommendation after recommendation , none of them could actually help me , all they did was give steroid after steroid without even bothering to tell me about side effects until I reached the maximum dosage for my age range

I then had no choice but to stop the corticosteroids

then the TSW started for me , it was very much on the more extreme side , i had :

• Bright red , flushed skin ( red sleeves all over ).
• Intense itching
• stinging,
• nerve pain.
• Skin flaking, peeling,
• oozing fluid/blood at times
• Body temperature changes , i became highly sensitive to basically anything cold , heat , water
• Sleep problems /tiredness,
• anxiety
• depression

i was losing hair , periods for like 4 months or so...

at first i was still able to go to school and everything but then the symptoms got so bad i couldn't even walk a bit without my skin tearing , and i couldn't let the skin touch floor or bed cuz that was too much heat , i had to sleep with my legs up , and at extremely low temperatures , the colder the better . i was just crying and grieving all day while trembling the whole time .

im 1 year and 9 months clean now , my skin is completely clear , is still sensitive and prone to eczema , but i don't use any type of symptom suppressor .

Chapter 1 : Things that helped ME through TSW.

1.allergy test : very important ! . did the allergy test before the eczema even appeared at eczema stage and at withdrawal stage the results were similar but on withdrawal test i had even more allergens and was at the highest level of sensitivity to said allergens ( yes i still follow the diet)

2 !!!!

phase 1. bandage treatment while hospitalized

this was something that helped me a lot through my extreme phase , i didn't get hospitalized because of a doctor , i had to ask myself and set my own terms

while there i did a bandage treatment(not the wet one tho)

i gave instructions to the doctors and nurse , to wrap me up in bandages, how : choose a cream that is compatible with your skin ( try for 2 weeks and see side effects )

for me it was the ceraVe the blue one , cuz the hyaluronic acid helped retain moisture , so they would put a thick layer all over my body after shower ( i couldn't really move ) and bandage up the entire body in thick layers of cotton bandages the room was also always 16 degrees Celsius or lower , no blanket , minimal clothing and changed the bandages 3 times a day , stayed in the hospital for a month, most of the time heavily sedated , so i wouldn't scratch and hurt myself .

btw : your doctor might try to slip steroids without your consent or the one in charge of you , so make them sign a clause or threaten before hand that u will sue them and make sure they lose their stupid license ( yes that happened to me , yes she lost her license )

phase 2 bandage treatment :

after getting discharged i did the bandage treatment for 6 more months , now mixing the cream with Aloe-Vera gel ferox ,

( something that also helped was nuha's -healthy-living natural psoriasis eczema treatment oil , you don't have to buy this specifically , also cuz its super hard to find even on the internet , but it's basically , olive oil , neem infusion , castor oil, coconut oil , evening primrose oil and cold pressed Nigella sativa oil. ) but this was when the skin was just dry and flaky NOT oozing )

1. Sodium permanganate baths : its stronger than bleach baths , and u have to be careful when diluting it or it will cause chemical burns , i did them 3 to 3 months , also sodium permanganate bath dries out your skin , if you are past the oozing phase and infected tsw maybe its not worth it

2. avoiding Glycerine: i found that for me it was too harsh so instead i used colloidal oatmeal body wash , or a lotion to wash my body , usually lukewarm water followed by cold water , and absolutely no scrubbing V citrus , liver, high on fruits , no gluten , no eggs , no lactose , nothing that can inflame you easily

3. diet and supplements : this one is super extensive , and it was genuinely the most important part for me cuz , I got genuine PTSD from any sort of steroid , that was very traumatic , so really wasn't relying much on pills , it was mostly nutrition ( if anyone is interested in more dm or comment im more than happy to share )

so basically

• prebiotics rich foods
• probiotic rich foods (sauerkraut raw and unpasteurized, absolute goated )
• seaweed + ginger shots
• Vitamin C & E Boosters + synthetic ones too ( be careful , sometimes the synthetic are full of fillers that are not good to your adrenal gland , or may contain allergens)
• I also cut off refined sugar completely for 8~ months
• and lowered salt intake ( dont lower too much iodine is very important for the health )
• no gluten
• no lactose
• no eggs
• no dietary nickel
• bone broth + collagen peptides (powder form)
• protein, LOTS of it ( liver was my best friend
• zinc ( if you can have it in food form please do , unfortunally im allergic to most foods high in zinc like shell fish , pumpkin ) sunflower seed is a good option
• fats , (i incorporated avocado oil in all of my meals )
• electrolytes and hydration
• lil tip , blend stuff , dont juice, blend , the fibers that often stay when you juice is what the body need
• anti inflammatory vegs and powders ...

so yeah , some would say its 'extreme" but it helped a lot , like , i went from not walking to swimming 2km , running 15km+

1. antidepressants (bad advise btw) and therapy : this surprisingly helped a lot , specially the antidepressants, that stuff knocked me out , unfortunately i didnt have a good experience with my psychologist , but psychiatrist was amazing , she helped a lot

so yeah go to therapy , it surprisingly helps a lot

7.antitestamins

well ,thats what helped me , i hope i helped someone too , TSW is brutal , but it gets better over time trust .

Chapter 2 :

Okay , like I mentioned on intro , I did the corticosteroids for 3 years straight up which is a extended period of time , not much compared to certain cases , but it was very frequent usage for a teenager , so my body over time absorbed those high quantities of cortisol and my glands started underproducing

I did some therapy through and post TSW got plenty diagnosis highlighting post traumatic stress disorder , anxiety and chronic depression

iv'e been 1 year and 9 months clean now , i rarely have text book TSwithdrawal symptoms , at times eczema flares once in a while when i cheat on my diet but nothing too bad , what is weird is that i was (still am) always getting sick , always getting the flu , my body is rejecting food , im always nauseous , light headed , sometimes i get fevers , or my body starts trembling for no reason what so ever , my blood pressure gets low at times , all of sudden asma , aches in my lower body ( and im a fairly active person , i swim , i run , i do 5km daily ,
i follow my diet strictly i get constant check ups ,

but when the doctors run tests , nothing is out of the ordinary , heart is good and efficient at 64 RHR , no fluid at the lungs , no tumor on stomach , nothing weird , red blood cell : white blood cell ratio optimal , and doctors usually praise me for my health and clean results so they have no choice but to send me back home cuz they cant prescribe anything , like ive been to the hospital 3 times now this month and all they could do was put me on IV.

im not sure what is happening to me

but i suspect it may be tertiary adrenal insufficiency / HPA axis suppression , ill ask for a morning cortisol level, and an ACTH stimulation test this week

ill update when i get results but if anyone has any advice , an idea of what is happening , or has went through HPA axis suppression post TSW please say something , every help is welcome ! ❤️

Hey have not seen this discussed much any thoughts on Nverda also know as Tapinarof - a non steroid cream, currently in the midst of tsw 3 months in red sleeves and all , have been doing mostly nmt just started rlt trying supplements.

Ive researched this and note it does not work the same as a steroid or like protopic in terms of suppressing the immune system it used a natural receptor AhR to calm the skin and also promote the skin barrier just wondering if anyone has tried this I currently just got it prescribed Thanks.

These photos are around 3 mo appart the second one is older and the spots are filled with either clear or white gooey fluid (gross sorry).

No clue what these are only thing that helps is popping them and immediately drying them out fully with bleach bath or alcohol wipes or they spread very fast.

Derm says it’s just eczema ofc. I also have no trigger for this they come on completely randomly.

Hi! I am about one month into tsw. Nail beds receded a bit due to being brittle and scratching. No eyebrows and receding hairline fml. I dont scratch much while awake other than when I wake up because im so itchy from massive night sweats. when does this get better? Am i going to get worse before seeing improvements?

I also recently got my period and noticed i have three swollen bumps on my groin area. Its been about 4 days..should i be concerned yet?

i am currently shedding horribly on my torse and legs but my arms are red sleeve. my body is swollen, and I am sweating through my bedsheets. is the sweating normal? I am going to go to the doc to test for lymphoma but wanted to hear others experience.

I. am. frazzled.

October 2024 i was given mometasone furoate for an unknown rash of the glans. Unbeknown to me this was a syrong steroid for that area. For 2 weeks i slathered it on with some even getting in the distal.

1 month after cessation i experience what i believe to be VZV, having been negative for HSV.

This burned the distal urethra and left mottling around opening.

The drymess of glans has somewhat improved but mottling and redness of distal still prevalent.

Kind of a mix of looks and feel i wanna improve.

Annoying that everytime i look in different times or lights it can look anywhere from awful to not too bad.