Webinar: The Skinny on TSW and Steroids

[@quinnceyxd]

Are we going to ban together and sue! Pharmaceutical companies, doctors, somebody? It is absolutely insane how long I have taken steroids without being made aware of the side effect or withdrawals. Nobody talked to me about tapering off or not over using this medicine or what to do when I feel like my skin is rotting. Is anybody mad?

[@NationalEczema]

Many, MANY are mad. We recommend following ITSAN on social media and getting involved with their organization via their website. At NEA, we do what we can to educate not only our patient community with resources such as this video but also healthcare providers who are prescribing these dangerous medications. The fight continues.

[@Synopsis0]

This is what I’m saying we need to ban together and get these creams banned or something they should be jailed for doing this to people and then saying they don’t believe in it this is a crime this condition is a disability

[@mercedesb5344]

I completely agree! It’s a disability

[@ibrahimkamara5352]

One hundred percent agree! My daughter have been battling this for almost 5 years now! My whole family has been under stress and depression 😢. This is a crime!!!!

[@deegma1]

@@ibrahimkamara5352 It's torture. It is beating me up. I hope your daughter heals soon. Please don't leave her alone for long. No matter the age. I am 62 and cried for my mom. 🥲

[@lisaann9749]

Thank you so much for this! I am 3.5 months in with TSW and suffering. I have watched every single video out there twice over. Then I came across this new one. I appreciate doctors acknowledging TSW. Keep up the great work.

[@NationalEczema]

Glad you enjoyed the webinar and wishing you the best in your TSW journey.

[@sebastiancorrea8862]

How do u going?

[@ashiq7992]

How r u now..what treatment u do

[@kyleafranks6045]

😊

[@kimbrumfield6564]

Kelly, I just finished your book. It is harrowing. Your strength is incredible and your story is inspirational.

[@deegma1]

OMG! I am crying right now. I posted "Skin on fire" on FB and had my sister share it. She says, they immediately removed it and added "false information. I am dealing with same and I am 62 and going through post menopause and TSW which both dysregulate my body temperature. I have many pictures and want to help others. I need to stay sane. I don't want to trigger anyone. But I am breaking down. I don't know how much more I can take. I have tried NMT , but the night sweats add moisture and my skin burns. I feel hot and freezing cold. I have lost weight. afraid to eat. I am an empty shell of myself. I don't care what I look like. It just exhaust me. It will be one year in January. I've had 5 break downs. (okay 6 )yet, I start singing to stay strong. I get knocked down, but I get up again, you're never gonna keep me down. Music & laughter. Meds in the middle of the torture.

[@NationalEczema]

Sending (gentle) hugs your way. Are you working with a healthcare provider to help you through this?

[@richardguthrie3422]

Keep ice packs in the fridge. I find when you get unbearable hot flushing put the cold pack onto the skin. This gets the temperature down and relieves the need to scratch as much.

[@e.p.t.2358]

I have seen 3 doctors about eczema. All used topical steroids. None mentioned TSW. I never heard of TSW until after I had used Triamcinolone for 6 months, and stopped because I heard of skin thinning.

[@NationalEczema]

TSW isn't as well known as we'd like at this point. That's why the work that ITSAN does to raise awareness and educate is so valuable. And that's why we (NEA) work to keep our community of people with eczema informed about TSW.

[@spiech8871]

Why wasn't CAP treatment presented as an option by Kelly or Dr. Lio?

[@melissaukph]

Thanks so much for sharing, Kelly 💕

[@meuko]

I just got prescribed 6 different steroid creams by my dermatologist (strength ranging from 0.1~0.6) and I'm being told to come back after two weeks to check the progress on my skin. I've read about TSW before and I was trying to inquire more about it but there was quite the language barrier so I couldn't get more information. I'm just considering living with my seb derm if no progress is made after two weeks, rather that than living with TSW. Regardless, in general, when talking about these sad, preventable horror stories, are we talking about months, years or decades of use? I'm curious as to see how long on these steroids is acceptable.

[@NationalEczema]

It sounds like your dermatologist wants you to come back to reassess in 2 weeks. That sounds reasonable. At that time, you can determine next steps based on the condition of your flare. From there, you can work with your doctor to develop an eczema care plan that avoids topical steroids.

[@sarahdenordwall2588]

This was so so helpful! I just returned from hospital to examine a lump in my throat area when I went to the doctor about my eczema. I was there 3 days and they concluded it’s not cancer and sent me home with very strong steroids in case my skin flared again. They attempted no diagnosis beyond that even though I begged for it. I came home distressed and depressed but YOUR video has revealed to me that EVERY symptom I have is TSW!!!! And the lump and swollen throat are edema from TSW! The temperature craziness the apparent allergies to my environment that are there one minute and gone the next day are TSW. I’m not goi g crazy! It’s real!! Thankyou Thankyou. So now what? How do I treat the unsightly lump in my throat area? I can’t move my head from side to side or lift it from my pillow except with my hands. I can’t cough without pain. My skin round my neck and down my chest seems to have lost it!/ elasticity? What do I do? Who in England understands this? Thankyou so much for giving me hope.

[@NationalEczema]

We are so glad to hear this video was so helpful for you!! We have more information on TSW on our website at nationaleczema.org/topical-steroid-withdrawal/. We also recommend visiting www.itsan.org/ as they are the leading nonprofit dedicated solely to supporting and providing resources to people with TSW. Unfortunately we aren't able to advise or recommend treatments regarding you neck/throat issues. Again, so glad to hear you found the video helpful and have hope. There's a community of people moving through these conditions alongside you and we are all here to support you in the best ways that we can 💙

[@freshrust]

Look into CAP clinic theres one in UK

[@ibrahimkamara5352]

My daughter has been suffering from this for almost 5 years now. We really need to sue somebody 😢.

[@NationalEczema]

So sorry to hear that your daughter is going through this.

[@Paul-qq7mh]

Same. I'm 5 years in and still suffering terribly.

[@paulkill8]

5 years in too and still suffering a bit.. (face and hands where the worst) my hands wont heal and my face is still very fragile to allergens ...24 years of use what a fucking shame derms are trash

[@michaelacomptonmusic]

Thank you for bringing this to my attention. My daughter has been prescribed steroids for 16 years. And is her facial skin rash ever any better? No! Time to stop that madness.

[@NationalEczema]

💙 It's our duty to spread awareness! Best of luck with your daughter's journey. Keep us updated!

[@janehyden1652]

IVE GOT ONE SO CALLED NURSE WHO IS HARRASSING ME ABOUT TAKING STERIODS---I KEEP TELLING HER NO BUT SHE KEEPS BUGGING ME. IM ALREADY TAKING IT FOR EXZEMA

[@deegma1]

I wanted to add, since only some of us are affected. I was also using Preparation H. I later found that, that too is a steroid. I've also had epidural shots to my neck. Over the counter creams & prescription. More than 25 years ago I got what I now believe was the first sign, I was feeling the beginning of TSW . I wouldn't sweat, but got cold. Also my eyes were shutting. Got a steroid shot and was clear for at least 2 years. Now I have TSW

[@sebastiancorrea8862]

How do u going?

[@emilbullsking]

I am in my third month, it has been a hell for sure.

[@davidsmusic31]

Helpful video. Do you think usage of tacrolimus ointment while in TSW do any help in healing TSW?

[@NationalEczema]

Thanks for your question! We will add it to our list of potential questions for a future episode of our podcast, Eczema Answered.

[@cord11ful]

why not just answer the question here?@@NationalEczema

[@dzmachine]

Last year I had swim cell carcinoma of the throat so they took off and while they were giving me chemotherapy, they put steroids in the chemotherapy and now my entire body is so flared. Am I able to go on Tuan with a history of metastatic squamous cell carcinoma?

[@dzmachine]

Not Tuan, Dupixent

[@NationalEczema]

Great question and one that is best answered by a healthcare professional! We will add this to our list of questions for our podcast segment, Eczema Answered, in which eczema experts respond to questions like yours.

[@CartoonCraze-Hannan]

Kindly make video for atopic dermatitis in babies and its treatment

[@NationalEczema]

We have tons of resources on our website on this topic! Consider starting here: nationaleczema.org/blog/podcast-eczema-in-infants/

[@sleepysounds8340]

Glad this is being taken seriously...

[@NationalEczema]

More resources and information on our website if you're interested in learning more 💙

[@JulijaMlakar]

Спасибо за видео! Очень полезно для русскоязычного комьюнити TSW ( Синдрома Отмены Топических Кортикостероидов).

[@NationalEczema]

Рад, что вам понравилось!

[@aoicobly3996]

I use oral steroid way more than topical steroid, but I am suffering from TSW currently. Is it normal?

[@NationalEczema]

Withdrawal symptoms can be experienced from both oral and topical steroids.

[@worer850]

Anyone can get tsw but topical application has to happen first. eye, ear, and nose corticosteriod can make the problem super charged. Corticosteroids are systemic themselves. That why you get red sleeves even though you never put cream there.

[@kimurasquirrel]

What is Peter Lio's current opinion on the ARON rigeme that ultilizes diluted steriod, moisturizer, and antibiotic with tapering as a means to prevent TSW and also treat eczema as well as the notion that TSW is weakened skin and staph overgrowth?

[@NationalEczema]

Interesting question! We will add it to our list of potential questions for a future episode of our podcast, Eczema Answered.

[@kimurasquirrel]

Thank you, There seems to be some level of devisiveness againts steriods and its use espeically those that dx or even self dx themselves with TSW.@@NationalEczema

[@DokterOnCall]

this is so helpful, thank you

[@NationalEczema]

We're glad to hear you found it helpful!

[@quinnceyxd]

I’m 3 months into tsw. 😢

[@NationalEczema]

Wishing you luck on this awful journey 💔

[@yourTSWgirl]

I'm so sorry! Stay strong, you got this!!

[@e.p.t.2358]

What is the date of this presentation?

[@NationalEczema]

The live presentation was in September.

[@CyborganicDreamscape]

pretty sure i would have been better off just not doing anything but basic hygiene to manage eczema.

[@NationalEczema]

💙 so many people experiencing TSW would likely agree with you!

[@nazishyounus]

Thank you so much ❤❤

[@kingmulahoo4925]

Why would anybody take topical steroids when this is the risk? I had mild hives and this topical steroid made them so much worse topical steroids should be banned

[@NationalEczema]

Great point! What works for some doesn't work for all. Many people with eczema are able to use topical steroids with no issues. We believe it's important that our community stays informed about the risks of all available eczema treatments.

[@JackDisturber]

I've been using steroids "on and off" for about 10 years with 1-2 month breaks and mostly mild ones (Locoid), although what kickstarted my addiction was initial heavy duty steroid cream that's been provided to me when I've treated my first atopic dermatitis flareup and I have no idea why they gave me such a potent drug from start despite my symptoms being quite mild. Almost a year in withdrawal, most of the areas got better (skin is still dry and itchy but at least no oozing or bad scratches, no cracks or bleeding etc., flaking isn't constant), and for some reason my right cheek got worse in the past month or two. I can only tolerate panthenol sprays (5 to 10% dexpanthenol), emollients I used at the beginning are causing bad burning sensation. I'm assuming I have a relatively mild case but at times its been pure suffering

[@TheTeacherTeacher]

❤

[@NationalEczema]

So sorry to hear what you've gone through. Thank you for sharing your experience.

[@MeganHappy-un4zc]

I used nasal allergy spray and I think I have tsw

[@cord11ful]

I'm curious about the gender stats. Do women disproportionately suffer from these skin conditions and from TSW? I also suspect that if they do, are at least are presenting more than males to the healthcare system, that that could play a role in the predominantly male health system not taking these symptoms seriously. Hysteria anyone? That was a historical thing, attributing any unclear issue women presented with as 'hysteria'. This gender bias still exists, maybe especially in the medical field. If so, this would help explain how closed-minded many health professionals are to considering TSW as a thing.

[@NationalEczema]

This is a great question! Perhaps there is more information at www.itsan.org/. TSW does seem to disproportionately affect women.

[@Mcbuggler]

There's plenty of men affected by TSW. I have seen plenty of videos on youtube of men suffering from TSW. I'm a man and I was prescribed steroids and tacrolimus by female dermatologists, and was dismissed by them when I was going through TSW. Please don't turn this into a gender or race issue, that will greatly hurt the cause.

[@monicoconsebido2909]

please help

[@NationalEczema]

If you are struggling with TSW, we recommend ITSAN.org. They're dedicated to helping people with TSW and will be able to offer the best resources to you.

[@davidadams8027]

It’s ok if you have suppprt from your family. My wife just tells me to use steroids “why aren’t you looking after yourself!”

[@TheTeacherTeacher]

Stay strong ❤

[@hommy250]

My family just tells me to use Vaseline. They don't acknowledge my topical steroid withdrawal, and I'm literally out here with my skin oozing and in pain 24/7.

[@davidsmusic31]

My mom just wont stop blaming me for the foods i eat, and complain while cleaning my dried skin off the floor.

[@kayblock8009]

Month 2 😢 please help

[@NationalEczema]

Tons of resources available on both our website and ITSAN's: www.itsan.org/ ❣

[@yourTSWgirl]

Hang in there! You'll get through this!!

[@nirmalm4296]

When you say “ skinny “ on TSW , how long are we gonna encounter weight loss issues and can someone share their weight loss experiences ??? It’s so draining that on top of all the skin issues , you look kinda dead with all the weight loss .. also , even when the skin is improving , why is that body denies to gain weight back ?

[@NationalEczema]

"The Skinny" is a play on words. The term means "the truth." This webinar doesn't address the weight loss that can occur with TSW.

[@eljefe2211]

Ill be honest i have severe eczema, steroids simpy suppress inflamation They are very effective, sadly this itsan thing exists for some reason???? If it wasnt for steroids i would probarly be dead

[@Mcbuggler]

It's just information and experiences. If something works for you, and you have the knowledge of possible outcomes of long term steroid use, then all the better. You are able to make an informed decision on your health.

[@tiareynolds5728]

Great video. But, let us stop "trying" on people. We are not animals.

[@billmuno7191]

Xiu-Min Li, M.D

[@patm01]

@patm01 1 second ago @NationalEczema Thank you for your response. It would be helpful if you had a webinar about steroid addiction causing TSW.

[@NationalEczema]

In addition to this webinar about TSW?

[@patm01]

@@NationalEczema Yes, in addition to this webinar about TSA - the cause of addiction. Obviously it cannot be part of this webinar because it already happened.