Ask the Ecz-perts: How do you know if you're experiencing Topical Steroid Withdrawal (TSW)?

[@Katherine-em4fl]

What I learnt thanks to Eczema and to doctors, is that I'm the only one who can understand my body better and beat the beast. Doctors who have lost fellow eczema sufferers' trust are THE ONLY ONES RESPONSIBLE FOR IT.

[@tanzynz]

I absolutely agree with you. The doctors are the ones prescribing the steroids and then they blame the patients. My daughter has been going through TSW for the past eight months. She has never been told the dangers of steroids and is going through sheer hell with extreme pain, itching, oozing, losing her hair, debilitating exhaustion etc.. These so called doctors should be held accountable. Eczema was never like this and it is so obvious that steroids have caused the problem.

[@Katherine-em4fl]

@@tanzynz Thanks for sharing this Tanya, I'm sorry to hear your daughter has been struggling with this. :( I cannot imagine the pain it must be to go through this for such a long time. Might be worth checking there's no skin infection that could delay the healing?

[@tzapp2372]

@@tanzynz that's why we need to do our own research and have a good understanding of the side effects. I was prescribed Clindamycin and Diflucan at the same time because my doctor 'thought' I had infection. 3 years have passed and I still suffer from the side effects

[@shubhrajitparida6399]

@@tanzynz Hi. Sorry to hear about your daughter.Can you please how much days she applied steroid creams, and how many days it took to recover from withdrawal process. I think I am going through withdrawal myself, your reply would surely give me confidence. Thanks 🙏

[@brendaababey]

This is what happened to my daughter , she only had a bit of eczema on her arms and back of her legs . I was ignorant to the fact of TSW , and continue using steroid creams until I felt it wasn’t actually doing much for her as it would keep coming back . The moment we stopped steroids her “eczema” flare up all over her back , chest and neck . I’m so sooo sad for her and feel so guilty for not being informed enough . We were able to keep it under control and she healed 98% of it with diet , but she’s a kid and it’s hard for her to always be on a diet so the eczema is back with a vengeance , I wish I could find a solution for her . ☹️

[@flaneuredits]

I'm dealing with it right now since 4 months old I can't even move my stomach or any other part in that matter and quarantine is not helping at all and my joints can't move 😭😭😭😭

[@clb2264]

This is the same exact thing that I went through, and am still dealing with. My son is 12 now it it flares up everywhere I feel so helpless I want to cry for him. I have tried so many things and nothing works . The steroid creams are horrible with time they leave marks on the skin and he has also developed OCD with consistency of washing his hands. His back is all flared up and I wish there was a miracle!! Please let me know if you have tried anything different that you felt actually worked. Thank you

[@shahinefrancis6190]

I’m a bit late but I also have eczema and went threw tsw. What helped was witch hazel and African Shea butter 2x daily

[@shahinefrancis6190]

And exfoliating daily is a must

[@xx5t3phani3xx]

Brenda, as someone who went through TSW, and who had a mother who took me to a PCP that prescribed stronger and stronger doses of topical steroids, I want to let you know that it is not your fault. You are a mother who only wanted what was best for your child, and you listened to the medical professionals who have been trained in medicine to the best of what science and research at the time allowed. I never once blamed my mother for listening to the doctors; I don't even blame the doctors themselves. It's an issue with (what was then) the lack of research. But hopefully with all the developments in the last decade since I had TSW, more and more people will be more aware and think twice. Spread awareness and kindness and the story. I'm hoping for a brighter future.

[@bakkermaarten007]

It would have been nice if he had clarified what he meant with 'lots of new treatments...and help them get better'.

[@chauduong5359]

Meant you have to pay to see him

[@drewmimmack835]

Biologics. Embrel, Humira, etc

[@edenbrown3470]

Ditching steroids was so so liberating. So glad that I turned my life around!! I have never looked back, delighted that I documented the journey on my channel too xoxo

[@jacksong8131]

At least you didn't get skin thinning. Steroid creams can skin the thin and mess up your whole life if you have an idiot dermatologist.

[@shayisshit]

thank you

[@shubhrajitparida6399]

Hi, how much days u applied steroid creams, and how many days it took you recover from withdrawal process. I think I am going through withdrawal myself, your reply would surely give me confidence. Thanks 🙏

[@shawnstephens6795]

So....go to a doctor...get prescribed steroids...it makes things worse and develops into something you didn't even have before...and the answer is go see a doctor??? No thanks.

[@Miss.gg_ann]

No literally I went back to the same doctor who prescribed them to me in the first place and she gaslighted me and said TSW isn’t a real thing. She did NOTHING for me.

[@Synopsis0]

Exactly it’s compete bullsht they literally gave me a disability and I still had to pay them fuking scammers

[@emilydiaz8886]

I use topical steroids and have never had a problem.

[@wanderer12]

Something that everyone seems to miss is. Restoring the bacteria in your stomach using probiotics and supplements like L-Glutamine. Im about 2 weeks into my TSW and using(from a brand with a good reputation) 140 billion Live probiotics have brought my symptoms down about 50%. Im also using Calcium D Glucarate to help flush out lingering steroids and hormones related to those steroids. Also I've read that putting nothing on the skin and letting the body heal itself on its own is critical to your body re-developing ita natural ability to heal. I hope this helps some people. I could just imagine how horrible 1-2 years of this must be. Also something that is just a no Brainerd to me is stopping drinking absolutely all alcohol. Plain and simple meals like salad and chicken with minimal seasoning and sauces and drinking more water then your probably comfortable drinking.

[@theassassin9326]

Wait we have to suffer it for 1-2 years , I stop tsking simbikort which is steroids for asthma , and I stop taking it and 1 months later i got eczema

[@wanderer12]

@@theassassin9326 sorry to hear. I hope your journey works out for you. Im currently on a carnivore diet. Which i heard is also beneficial to people who suffer from Asma. You might want to check it out and looking into healing gut health. Steroids seriously damage the gut and organs...

[@mc4622]

How are you doing symptom- wise? any thoughts on what may be helping you if you are doing well? Im 8 months in and am still in a very bad place

[@shanecorr1694]

@@mc4622 how long did u use steroids for

[@09agrshn]

can i ask which brand live probiotics you take?

[@aveclasse17]

It is because crazy Dr Rappaport has told people to get off TS cold turkey. I am 6 years TSW and so tired. So glad there are sensible ppl like this dr.

[@elsunshine9976]

Does that mean im fucked?

[@iberianlion1459]

Just keep your withdrawal. You’ll heal better.

[@mikel2185]

I've been off steroids for about 8 months now and I'm still having a tough time with flare ups. Definitely never want to use them again. Does anyone know if using a drug like Dupixent would set me back?

[@Paul-qq7mh]

Good question. I'm on a trial tablet drug witch is getting compared to Dupixent (witch is working well). I really hope i don't gave to go through the withdrawal.

[@Paul-qq7mh]

Yes it does

[@Pokesamurai7]

Guys try water fasting it has been a tremendous help

[@christianbitarr]

Have you tried changing your diet?

[@frionmils6673]

CBD topical bro is the answer. At least for me. I noticed improvement while smoking weed. Now I quit and only using cbd cream. I have seboreic dermatitis tho.

[@gina6413]

I wish I had seen your video sometime ago. I had a very itchy spot on my leg a few years ago. I scratched it to the point of bleeding at times. I found a dermatologist who said it would get better and began a process of cortisone smaill injections around the rash and introduced cortisone injections on my hip to help periodically, along with intervals of prednisone pills. The skin problem remained localized in that area. Never had other areas of itching. The area got better off and on, with periods of returned itching at which point the same treatment approach was done. A few years forward with no problems and a few months ago my leg itchiness and scratchiness has come back ( I suspect it's STW) and rashness has appeared on my arms and neck. A dermatologist I just went to diagnosed me with sever eczema, wants me to take prednisone for 2 weeks, and begin Dupixent. I think I started with a bad case of dry skin that has worsened over time on my leg with STW and now it's being treated as an ongoing case of sever eczema to be treated with the Dupixent injections. I'm really interested in your thoughts. I don't want to go to that extent unless it's necessary.

[@Sounditoutahhwet]

Can this be a class action law suit?

[@ryandoherty9696]

Ash Russom I listened to doctors tell me steroid creams were safe to use multiple x per day for years, and now my life is a living hell. It’s ruined my skin, my life, my ability to do anything. I need care from family 24/7, my friends and partner are gone. And it’s because of steroids.

[@Sounditoutahhwet]

Ryan Doherty believe me, I know, and I feel your pain. It’s an absolute shame that these doctors are completely insensitive. If you haven’t found them yet, there is a whole community of folks on instagram under the hashtag ‘eczemawarrior’. You’re not alone.

[@wanderer12]

I've been thinking of bringing this to a lawyer as well. These steroids literally mutate our immune functions and our skin. Ive been thrown this cream and prednisone to help clear this up periodically my entire life. At this point I've lost all faith in the medical community...

[@ryandoherty9696]

@@wanderer12 Yeah. It is so obvious. I just picked up a topical by mistake at the pharmacy, and its literally written still “Apply 3x per day as needed.” My life is completely ruined today from coming off of steroids. I believe my adrenals are damaged and my cortisol and hormonal production is fucked and not functioning. I remember 6 years ago the first time my steroid prescription was raised, and I was sitting in the docs office...it was a woman dermatologist...and I straight up asked her “Can I really use this around 3-4 x per week all over my body and not have any skin side effect or thinning issues?” (Because I knew from my uncles use of hydrocortisone and damaged skin) and she said “Oh yes absolutely! No risk at all!”

[@wanderer12]

@@ryandoherty9696 you should check out rob stuarts yourube page. I thought I was on the right track. But I was still pretty far off and ended up going through 2.5 months of torture... now I think im on a good track to kicking this BS

[@Paul-qq7mh]

Please help the TSW people... What treatments can i use whilst going through TSW?

[@NationalEczema]

ITSAN is a great resource for the TSW community.

[@billnunez4887]

lol yeah so far people talk hours and hours but nobody actually tell me how to fix it

[@liajohnson4841]

There are many of us who only used steroid as a child and for some reason it wakes up as tsw many decades later due to a catalyst like stress.

[@NationalEczema]

Thank you for sharing 💙 and so sorry to hear about your experience with TSW. We have more TSW resources on our website if you are interested in exploring more!

[@xpertaab7261]

Eczema can be massively controlled with unprocessed whole foods. No refined sugar. Food has a big impact on your gut which is linked to your skin quality

[@nisreenhaider8884]

I used topical steroids on my face for couple of weeks then stopped for couple of weeks then went on the low dose kept using it on and off i realised every time i dont apply steroid creams on my face it gets sooo dry and burning so i kept applying o er a year on and off i wasn't aware of tsw all doctors told me i had atopic dermatitis but i finally saw people who are experiencing what im experiencing now i no more about tsw so i stopped all the steroids but only my face where i applied the steroids is dry, itchy and burning is this tsw because its only affecting my face no where else does this mean its not tsw because its only affecting my face please answerrrr i need to know whats going on im off any steroids for about 2 weeks now but no where on my body is affected only my face where i applied the topical steroids

[@NationalEczema]

It's important to continue to work with your dermatologist about this. If you're concerned about TSW, be sure that you are seeing a doctor who is aware of TSW and works with TSW patients. ITSAN.org should be able to help you find a healthcare provider who's experienced with TSW. So sorry you're struggling and wishing you a resolution soon. 💙

[@casper98204]

I'm dealing with the very same thing.

[@Madhavhiru]

I too dealing with the same thing..

[@Madhavhiru]

How is ur skin now?whether it has cured..

[@gemthomson6730]

I would love to know, what are all the other treatments that can be use to treat eczema? I have had eczema on and off for over 60yrs. Text sent from Darlington England.

[@NationalEczema]

Visit our website and navigate to Eczema 101 > Eczema Treatments on our menu to learn about the currently available eczema treatments and management tools.

[@par_ofjicles]

eczema is uncurable, but you can help prevent it, always use moisturizers, every. single. day, dont even miss a single day and ur good

[@pietersmit6031]

PLEASE TELL ME WHAT DO eCZ ESPERTS LOOK AT THE SKIN WITH A MAGNIFYING GLASS WHAT DO THEY ATTEMPT TO SEE"

[@NationalEczema]

Are you asking for information about TSW?

[@KirillySpace]

What new treatments?

[@RicePho]

Dupilumab, at the end you see the company Sanofi in the video. They made it, I know it works for TSW cause it cured me of my TSW that I had for 3-4 years.

[@SG-wu8eh]

I was just diagnosed with eczema and was prescribed a steroid cream. I’ve been using it for a few days and it’s working like a charm but I don’t want to become addicted. It started with my nipples while I was breastfeeding so I was misdiagnosed with thrush for months. They cracked and bled and peeled so I feel so relieved now. Now it’s spread to my face (although less severe). What should I do? Continue till I’m all clear? Stop immediately? If so what should I do instead?

[@fauxpaux5239]

I advise to use Traditional chinese medicine instead , I have met a chinese physician who studied both western and chinese medicine . From your comment , it is very likely that you have gotten TSW. Its very likely that u have TSW because the rash would NOT have spread to unaffected areas of the skin unless it is TSW. You need to find a dermatologist who have experience with both western and chinese medicine .I met a derma who have done clinical research on herbal chinese medicine for skin diseases . He was a very good derma because western medicine can only offer steroid creams and immunosuppressants. By using chinese medicine , it is possible for the body to go through the natural healing process. The derma understood the cycle of TSW and the cause of TSW .He was a better doctor than all the western dermatologists because he incorporated chinese medicine and western . ** i dont advice seeing a derma that only have western medicine knowledge to treat you because western medicine in all have ALOT of side effects in general ** i advice to stop the steroids completely because it will only worsen your rash . I live in Asia so i am not sure if chinese medicine is widely available in other countries. In the mean time if the rash is unbearable ,i advice to mix tea tree oil with almond oil to soothe the inflammation and the rash .I have gone through TSW and have lived with eczema for 17 years till recently i switched to chinese medicine and it was better.

[@SG-wu8eh]

Vivianna Low thank you so much for your comment. I don’t think it’s TSW because it spread to my face before I started using topical steroids. And my entire body had already gotten very sensitive. I’m not using them now. My rashes cleared up after a few days of using the steroid cream but if they return I don’t plan on using the cream again so thank you so much for your comment and your tips. I’ll definitely look into alternatives medicines.

[@NationalEczema]

@@SG-wu8eh you can learn about evidence-based complementary and alternative therapies for eczema from Dr. Lio here: nationaleczema.org/resources/videos/webinar-cam/

[@timmy6404]

They “can’t prove it’s (TSW) because of a potential lawsuit, I bet.

[@NationalEczema]

Actually it's because there's no current diagnostic criteria. Slowly but surely, more is being revealed about this complex condition; you can keep up with the latest at ITSAN.org.

[@northshorelight35]

Thank goodness I did not get a steroid shot. I didn’t like that doctor. He was too pushy and made it seem like the answer to my one arm rash. He prescribed me clobetasol and the rash went away. But now I have a whole slew of skin issues that didn’t exist before.

[@spitz5183]

Can you get withdrawal from Protopic? If so, can you get it even though you never used it continuously long-term?

[@spitz5183]

@Zodi I think you have the wrong idea of what TSW is. TSW is a rare adverse reaction to coming off potent steroids after prolonged use. Just because symptoms come back after stopping a medication, that does not mean it is TSW. Protopic, or any other medication for eczema for that matter, is not a cure. There is no cure for this condition. You can only treat it and manage it. Symptoms are likely to come back regardless unless you’ve grown out of it. It can be a relapse, or it can be because of other factors like weather, triggers, allergies, food, stress, the environment, etc. The symptoms have to be specific. A lot of people get a bad flare up and get scared that it’s TSW when it’s actually not. TSW is usually accompanied by bright red skin, with severe flaking and scaling as well as burning. It pretty much makes you look like a burn victim. Regardless, when you stop medication for a disease, symptoms tend to come back. That’s how it is with every disease. It’s not just exclusive to atopic eczema. I’ve personally never used Protopic long-term; it’s a once in a while treatment for me. I’ve always used it sparingly. When I do need it for a flare up, I apply it for no more than 4 days, then my skin is clear. These days, however, my facial flare ups come back after several days of stopping Protopic, but it’s nothing like TSW, just a normal eczema flare up. If I use Protopic twice a week, my flare ups do not return. And no, you are wrong. Protopic is NOT a steroid. Just because you experienced a severe flare up after stopping it that doesn’t mean it’s a steroid and they’ve been lying to us the whole time. It is an immunosuppressant and immunomodulator. The main ingredient is tacrolimus, which isn’t a steroid. Steroids around the eyes long-term can cause glaucoma and cataracts, but I’ve used Protopic near my eyes and around them for a long time with no issues with my sight. That’s why it’s safe to use around the eyes. Doctors wouldn’t lie about this kind of stuff. Please do not spread misinformation, especially when it’s about a disease. It can be dangerous. Some have even used Protopic to help with their TSW. My sister has used Protopic long term, and I told her to drastically reduce her usage. She has and she has no withdrawal at all. There is no evidence that Protopic can cause withdrawal symptoms in the same way steroids do. Either you’ve used steroids frequently for a long time and that’s why you’re experiencing withdrawal symptoms, and you’ve simply attributed it to Protopic, or it’s just a severe eczema flare up which you have mistaken for TSW.

[@spitz5183]

@UnaveganainTicino I did stop. Symptoms returned, but it was nothing like TSW, just an eczema flare up. TSW is usually accompanied by bright red skin that burns and constantly weeps. It’s different to a flare up. The medication that resulted in the TSW also tends to stop working, which pretty much forces you to stop it, beginning the phase of TSW. This does not happen with topical calcineurin inhibitors. The National Eczema Association, which acknowledges TSW and offers support for those going through it, even recommends the use of topical calcineurin inhibitors to help with the process. TSW is a rare reaction to coming off steroids after frequent, prolonged, or inappropriate use. The majority of people who use steroids do not develop TSW. The people who went through, or are currently going through, TSW used steroids almost daily for many months and even years. If you developed TSW, then you clearly did something wrong. It doesn’t just happen randomly for no reason despite appropriate short term use. Immunosuppressants like Prednisone can have side effects, yes, but they’re different to TSW. They tend to affect your body more than your skin. Examples include Cushing’s syndrome, hormonal changes, weight gain, etc. These are, of course, more likely the longer you are on the immunosuppressant and the stronger the immunosuppressant.

[@seancockburn1450]

@@spitz5183 prednisone is a steroid it's part of the corticosteroids group or whatever they call it the same as hydrocortisone cream etc

[@spitz5183]

@@seancockburn1450 Yes, I’m aware, but it’s still an immunosuppressant.

[@alessandra9888]

hi, so if i use topical steroids correctly i wont develop tsw?

[@gabrielnormanpalana4622]

So no cure? Just suffer.

[@ogsupremelyvida]

just use steroids

[@yashanimayadunna9083]

Why can't this doctor talk with some humanity. He tries to scare us. Telling TSW can go on and on. How can this be possible is your adrenal glands starts functioning normally.