TSW Journey: A Topical Steroid Withdrawal Documentary
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- Опубликовано: 16 дек 2021
- After learning about Topical Steroid Withdrawal and discovering the small community of TSW warriors, I started my own withdrawal journey on July 14, 2021. Going through the withdrawal process has been an incredible struggle for me, on both my physical and mental health. It frustrates me with how unaware people are about Topical Steroid Addiction, but I can't blame them. Topical Steroid Withdrawal is not recognized by the medical community, meaning that TSW patients are not getting the attention or help that they need. Because of this, we are suffering in silence. I hope that this documentary can help bring awareness to this drug dependency and show how serious it is for people to go through withdrawal. I also hope that those who are going through this are able to use this video as a voice for others to understand.
Thank you so much Zainab Danjuma for joining me in the documentary and sharing your own experiences!
Please go follow her own TSW journey on her channel:
/ @iambeezee
#EczemaAwareness #Eczema #TopicalSteroidWithdrawal 
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TSW absolutely changed my life. I suffered acutely for approx 2 years (6-8 months indoors and bed ridden) and on and off flares and anniversary flares for the next 3-4 years.
All I can say to you is that you will come through and it will impact your life in a meaningful way and positively should you use it as a catalyst. Noone truly understands the consistency of torment. Consistent being the key word. You are young, you have a lot ahead of you. One day at a time.
For sure, there are so many things I have taken for granted before going through this that I've now gained a greater appreciation for now. I am young and going through important stages in my life, everything with college, work, and a social life, it is difficult to fine a sense of consistency in life besides the torment. But like you said, there is a lot of torment ahead and we all just have to take it one day at a time!
My daughter who is just 4 has been going through the same exact experience. No one seems to understand how hard this journey is for those who suffer with TSW, especially the doctors how continually keep you in a vicious cycle of using steroids. My daughter has been mostly off steroids. Blisters covered her body, skin flakes every, thin hair and swelling at her worst. Now the eczema is localized to her feet, hands, back of neck and some creases. I give her baths every other day, treat with Neosporin and use A&D and E ointment to keep you skin from cracking. Ice to help with scratching and inflammation. I am truly with you on this journey. Don't give up
I hope she get well soon abd try dead sea salt baths@@LivinginNewJersey
@@ahmedalmatar3651 thank you. I'll give it a try
I hope all those going through TSW can say positive and safe. It truly is a nightmare, but there is light at the end of the tunnel. My baby is a normal kid now
Thank you so much for doing this. It has brought me to tears as I can literally relate to every single word. Wish you a very fast healing!
Aww, thank you for taking the time to watch it! It really means a lot to me ❤️
I used steriods for 23 years and I just stopped using them and I’m having a really bad flare up now on my face which is awful but trying to remain positive 🥺
We need more awareness videos like this one! Kudos to you for creating such a quality film during the peak of TSW.
Thank you so much for watching it! I am just doing my best to share my experience and get people to seriously talk about it.
My thoughts out to you brother, beautiful documentary thank you for spreading awareness! As someone who has healed completely from TSW please please please go on an elimination/AIP diet basically meaning cutting out all gluten, milk, soy, top allergens, etc and only eating anti-inflammatory vegetables, white rice, low sugar fruits, fish, and grass fed beef and chicken. Almost made me want to cry when I saw you drinking the ensure smoothie as I know that is causing a reaction since it's loaded with allergens. Also if you can afford it look into The Institute of Functional Medicine, these are MD's that will believe in TSW and more importantly that eczema can be cured! Wishing you a speedy recovery
Great to know that you’ve healed. Gives the rest of us hope
Thank you so much! I’m so happy to hear that you’ve healed! I know exactly what you’re talking about, I’ve gone on the anti-inflammatory diet for about 3-4 months and sadly I saw no results. Because of the diet I had lost a bunch of weight and had to start taking ensure smoothies to get my energy and weight back up. I’ve slowly been easing up on my anti-inflammatory diet recently and I’ve found that I’ve personally have not been reacting as much lately. Plus since stress was a big trigger, there was less stress on maintaining a strict diet for me so I flared up less. That is just my personal experience on the matter, but thank you so much for your thoughts and advice!
This was amazing
Thank you so much! I’m glad you think so!
I went through TSW 7 years ago and haven't really thought about it since - i've completely recovered! Let me know if you have any questions etc. It was the hardest 9 months of my life and my skin looked like yours the entire time. I have some scars on my arms from before.
My advice is icepacks. Whenever I had severe pain / itch I would hold an ice pack on it and it would make the pain/itch go away immedaitely. I kept two in the freezer at all times.
When I went to a new doctor for just an annual physical, I wrote in my paperwork that I was allergic to corticosteroids. Later she saw my arms (I was mostly healed at that point and in recovery) and immediately wanted to prescribe me steroids. After trying to explain myself and clearly stating I don’t want a prescription she said exactly what you mentioned in the video, stating I’m not allergic and I just abused and overused the steroids and what happened to me was just the side effects of what happens when you overuse steroids. She continued to blame me and prescribed them anyways but I never picked them up and never will. I used Clobetasol in recent years and only a few times a year because my eczema was originally bearable similar to you and would pop up for a little while then go away again. I’d use Clobetasol sparingly and for not more than 2 weeks and I still got addicted and went through TSW, the worst mental and physical pain I’ve gone through in my life. Thank you for sharing your story and bringing awareness. Thank you to Zainab as well as I watched all her TSW videos while I was going through it. I cannot relate more to your stories and I hope TSW becomes more widely known!
I’m so sorry to hear that your doctor was so adamant about prescribing you steroids. I’m sure they mean well, but are just not fully informed or understanding of the extreme consequences. Sadly we are their silent guinea pigs, but I hope our stories can help inform others about the struggles we have to live with.
Dear Brian,
I never commented on RUclips for the many years that I have had an account, but I felt compelled to write to you after I've watched your video.
I want to tell you that you're not alone in this journey, I know full well the feeling of being unheard and misdiagnosed over and over to the point of being harmed by medical professionals whom, as patients, we're supposed to be able to trust without the fear that they will harm us, even if by negligence.
You will feel lonely and it will take many months, and even maybe a few years to heal, but you WILL get through this.
I will be watching over your journey and subscribe to your channel, supporting you from a distance.
I would like to add that I have seen an interesting video about a lady saying that we should treat TSW patients as if they were actual burn victims because she has noticed that her patients would heal and feel better with the same treatments you would use for burned skin. I have tried after sun aloe vera gel on my skin and it has helped quite a bit with my skin for a temporary relief. I will be trying next gel-like bandages to see if it helps. If I can find the video in question again, I will send you the link.
Take care, each day is another step you've won over TSW.
This is so well done, I’m so happy you’ve put this together, as it perfectly captures the TSW experience and will provide so much validation and support for everyone who is going through this (and their friends/ families). I’m sorry that you’re going through this, but I’m so happy that you’ve found the answer now and that you’re on your way to healing.
I also spent many nights awake at 3am, eating alone in the kitchen while everyone else was asleep!
Thank you so so much for putting this together Brian. Lots of love and support to you, I pray you recover fully very soon
Thank you so much! The TSW experience is so scary when going in blind. There is also no definitive validation from any medical community, only from ourselves. Food hits differently at 3am! But I guess life hits differently during TSW… Haha but seriously, I’ve found your videos to be incredibly insightful during my own journey! The community is lucky to have a figure like you doing the hard research. It means a lot to me that you took the time to watch my own journey. I hope you also recover soon! Lots of love!
@@BrianNFX I couldn’t agree more. Hopefully soon we can see this condition given the recognition it deserves, and people find the support from the system that they need.
That’s so kind of you, I really appreciate it. Thank you so much! 💐
@@tsw_atlas Yes, to reiterate what Brian said, your main TSW video helped me so much as well and I thank you from he bottom of my heart for creating it. It has helped and continues to help so many that are at their various stages of TSW. You're a hero Dr. Khaled, a true hero!
@@topicalroidrage this was so lovely to read, thank you honestly for taking the time to write this, it means a lot to me to know that the information I share helps! I hope you’re doing well and am sending you all my love and support for your TSW experience, I pray it will be as smooth and as short as possible 💐
I don’t have eczema as such, the closest I’ve experienced is when I had an allergic reaction to bio laundry detergent. I didn’t know at the time that I was allergic to it. I started getting what I and everyone around me thought was eczema on my eyelids. It got worse during the night and then a bit better during the day, but it gradually got worse over all and in a few weeks time I could barely open my eyes because they were so swollen, and the eczema (or what I thought was eczwma on my eyelids had turned into weeping sores. I felt disgusting, it hurt, and I felt like everyone was looking at me. I have obviously not experienced anything close to this, but my small experience with those skin issues and the pain associated with it was horrible in itself. I can only imagine going through it a thousand times worse 🥺 I’m so sorry you att having to go through this! Thank you for raising awareness. I didn’t know those topical steroids could be that dangerou. I wish you a speedy recovery 🙏🏻 Take care!
Yeah it really is an indescribable experience I would never wish on my worse enemy. Thank you for your kind words! I hope you’re doing well and staying healthy! :)
10 minutes in and just want to say thank you so much for sharing your journey with us. Happy healing
It’s been a tough journey, I just hope everyone finds a voice within this doc. Thank you for watching!
My heart breaks for you and I know what you are going through as I am in month 14 of my TSW journey and can relate to every single thing you have shared. It is a living hell, but we have to tell ourselves that every day is a healing day and we WILL get through this. Stay strong and stay positive, as difficult as that is and keep finding hope in the many stories of others who are going through this too. Thankyou for sharing your journey with such honesty. 🙏
Love this! And love Z!! So glad you could connect with her! We truly needed a male perspective! I have a documentary on TSW that I put together from 2015-2017 and released in 2019. I had so many frmale voices, but only a small amount of male, and this was beautifully done!!! Lots of love, Briana Banos.
Yes! Zainab as so lovely, I’m super grateful that I got to talk with her! I never realized where was a lack of male voices on the subject, I wish I could’ve brought some sort of unique male perspective on TSW. But I think it it affects us all the same and all differently… if that makes any sense 😅
@@BrianNFX totally agree! I just know, if you search youtube, lots more female voices are on display, so I am just glad another one of the males is out there. It's such a day by day process, and like you said, everyone is so different, yet the same.
Thank you for documenting your journey. Been going thru TSW for several years now, and its gradually getting better but it is slow. I have not had a flare up lately but the skin is still not back to where it was pre-TSW. I wish you a speedy recovery Brian.
I'm in my 3rd week tsw. What a fucking nightmare!!!! Thank you for this video and spreading awareness 💜
Amazing doco. Your truth and beauty shine through. I'm 40 days into TSW. I started a 20 day water fast 3 weeks into my TSW journey and it worked wonders. All the best for a speedy and full recovery.
You are so brave to make this video! You really demonstrate the suffering associated with TSW and the total lack of disregard from the medical community. I am 9 months into TSW withdrawal and can relate to those very painful flares. I still have a lot more healing to do but I have found that being on an autoimmune diet and taking supplements has helped me heal. I no longer have to sleep with ice packs every night - only on occasion with a bad flare. Hang in there and thank you for sharing your journey.
Great video man. A lot of it definitely hits home. I started my tsw journey in 2014 and am still going today. I wish you all the best on yours.
I'm so touched by your video and how well it's put together. I'm going through TSW and can relate on how isolating, emotionally and physically painful this journey can be. I'm sending it to my small circle of friends and family to better educate them on what I'm going through. Thank you and know you're not alone. 🙏
Hi Brian, I am also a sufferer from eczema and also going through what u have gone in your videos now and I truly understand the physical and the most important one, the mental damages that we had in this journey. It's really tough in this game.
Nonetheless, I wish you be blessed with good health, to have your healthy skin back and the most importantly to have back your life and yourself in this. Thank you for your video as I knew that I wasn't alone in this...:(
Wishing you a speedy recovery and lots of strength. I have suffered with Eczema all my life and was prescribed steroids. My withdrawal has not been as severe as yours but I understand your pain and wish there was more help. My thoughts are with you and all those suffering with TSW, and any severe skin condition. It is debilitating.
This brought me to tears. You are so brave. I really hope you are doing well. I am in week 3 of TSW. Thankyou for sharing this!
Hey dude love this doc! I’m also currently going through TSW as well and you’ve literally described my life for the past 6 months, hope your well and let’s keep at it my guy🙌🏽
I'm punching air because I haven't seen this sooner... Production is amazing and the message is invaluable.
Thanks for making this documentary Brian ✌
Thank you so much for sharing this Brian. I'm about a month behind you in my TSW journey. It's hell. I wouldn't wish this on anyone. Hope you recover as soon as possible
I know what you mean! Going through it first hand is devastating, but I can't imagine having to watch someone else go through this and having that feeling of helplessness. I just wish this was a problem we didn't have to deal with. You're doing so well on your journey, please keep it up and I wish you a speedy recovery!
Thank you so much for making this. It was so well done. I’m nearing month two. The pain is unlike anything else. Please update us on how you’re doing!
I HOPE THIS GOES VIRAL and THANKYOU for putting this together much appreciated
Haha thank you so much!
Brother my heart goes out to you. Thank you for sharing. This brought me to tears, i was literally begging you not to scratch at the end. I felt like I was watching myself and it hit hard. I've been thru tsw and "should know better". Yet here I am, relapsed and withdrawal again. Shaved my head last week. Quit the creams two days ago. We are not alone. Please reach out if it gets tough or anyone wants to talk. At times I've felt I just want to die. It has been so hard on my mental health, relationships, business. The ability to enjoy life. There is a light at the end of the tunnel. It does subside. I've been there. You will get there brother. You will. You are a great man
Thank you so much for your kind words! I’m so sorry to hear that you relapsed recently and had to quite again. I know exactly what you mean wanting to die and feeling so helpless in your daily life. I truly wish you the best and hope you get better soon.
I realy feel you!.I suffer from tsw myself since 1 year. thank you for your important video. it's so important to talk about it and that people also see what tsw is doing to all the tsw survivor. I wish you all the best and remember...you are not allone..much love from switzerland.
Wow! Thank you so much! It really is tough to talk about, but people need to know we’re out there. I hope you’re staying safe and doing well!
Thanks for sharing your journey and progress Brian. Tsw is hell on earth and I’ve experienced all the symptoms and stages you’ve been through, thank god for sea salt baths! Matt, 38, UK
Ps. I’ve shared it to ITSAN’s fb group 👍🏻
@@mattennion Thank you so much! I appreciate it!
This was such a powerful documentary. Very insightful bro. Love this work and i know you'll get through this. You definitely have my support🙏🏿💯
Zainab was the first tsw youtuber I found on my journey as well!!! She helped so much
Thank you for sharing your story and spreading awareness 🙏. I hope you heal as quickly as possible. I’m not healed completely, but it does get better with time. I also think finding a good functional/integrated medicine doctor can help with working our dietary/lifestyle changes and supplements. They don’t solve all the symptoms, but do help.
Stay strong ✊ we’ll get through this. ❤️
I'm so glad to hear that dietary/lifestyle changes and supplements have helped with your healing! I hope your healing journey continues down this road of progress, I too have found some things to help me out and now I'm just letting time take its course.
I'm happy I came across this video.
I stopped topical steroids cold turkey 4 days ago after 4-5 years of using it on and off for my eczema.
So far I have not experienced symptoms of withdrawal yet but I've been preparing myself for it by watching videos and doing research, sharing the sources and info with my family and overhauled my diet on the day I stopped.
I know that whatever comes will most likely be the most harrowing period of my life but I'm trying to constantly remind myself that's it's gonna be a temporary ordeal for a lifetime change and it won't be forever, that I will heal and come out stronger than I've ever been.
Looking forward to seeing more from you
Congrats on stopping topical steroids! I wish I replied earlier! It’s really important to have a close support system around you when you’re going through this. I’m so excited to see you come out stronger than ever and trust me, you’re probably gonna feel weaker than ever. Please, come back and reach out to me if you ever feel the need to talk about anything or remind yourself that this is temporary. It’s a very vulnerable time to go through and it’ll be difficult to power through on will power alone, just know that there are others going through the same thing and that you’re not alone. I wish you the best on your journey!
@@BrianNFX it's okay! I understand that life gets in the way especially when recovering from a drug withdrawal. I am almost a month tsw by now and so far I can feel my body increase in sensitivity, my sleep was affected by it too. So far I haven't experienced widespread redness or oozing yet the most I got is an increase in itchiness and sensitivity and sleep issues but apparently being a slow burner is a thing so I'm worried about reaching my peak of tsw. But I'm trying my best to hang in there by changing my diet, sleeping earlier and joining support groups + educating myself and investing in things that can help with comfort and easing the itch.
I hope you're handling things well and I only wish you the best in recovery and kicking this blasted condition out the door
Thank you for this. It’s really well done and the way you discuss your experience reminds me that this is temporary and a thing we’re going through instead of it feeling like the end of the world. Hope you heal soon.
Thank you for your words of wisdom, I hope you’re healing well yourself!
This documentary is so important 😀. Currently going through severe TSW and I hope you recover.
I also went through TSW - and this is identical to what I experienced, but I suffered so much more, couldn't regulate my temperature, urine infections for 3 months, ear infections for 3 months, hair loss, and loss of eyesight. Also caused an allergy to salicylates. As with everyone else, the neck sufferers the worst & takes the longest to heal.
Fighting the itchiness on my face due to the crying i did watching this video…lol Brian man…..Thank you for contributing in my healing during my #TSWJourney everything you & the your guest said and showed connected to me so deeply, especially when you guys shared your experience at the dermatologist & doctor, Thank You for becoming vulnerable enough to show yourself in such a raw ( & may i say informative ) way really is so admirable, Thank You for sharing and allowing people like us to not feel so alone & inform others on a major unnoticed, or noticed but not spoken about issue, Stay Strong, Sane & hopeful God Bless you #LovefromNYC
Haha noooo, I didn’t mean to start a widespread itching fest! I’m glad you found the documentary and talk with the guest informative. I would be glad to open up and share my raw experience if that means others could learn and feel as connected as you did. I hope you stay strong and healthy yourself!
Seriously, one of the best explained tsw documents I’ve watched. Thanks for making it.🙏
Thank you for watching it! I’m no medical expert on the subject, I’m just someone who’s sharing their personal experiences with it. I’m glad you found it informative in the end 🙏🏽
This was amazing bro! Thanks for sharing your journey with us!
Thanks bro! It means a lot that you took your time to followed along!
thank you so much for this documentary!!! i hope that on top of the other supplements, you’re taking B12 and D3 if you’re getting very little sun and need it. It’s so frustrating when people don’t realize that having a chronic condition/illness uncared for/ignored feeds into your mental well being :( The medical industrial complex is so evil for allowing this to happen to so many ppl and yet denying it to re-prescribe and make more money off of them. Sending you lots of love and care ❤️
Hello, we are a year and a half in to your daughters TSW journey. Watching your video today with my wife bought back memories ( and tears ) of times when we thought it would never get better. I can tell you it gets better. It is like a rollercoaster when you think the ride is over, there are a few more ups and downs. I believe it will all be worth it in the end. Today I can look at my daughter and say it is the best choice we ever made for her against all odds, doctors, dermatologists, and specialists. I've learned that sometimes there treatment for Eczema, can turn something small and manageable in to a monster that is more difficult to defeat then the eczema that took us all down the Tropical steroid Road. Everyone's journey is different and special in its own way. We wish you the best from the bottom of our hearts. Support is everywhere. God bless you and your journey. From all of us here...
Thank you so much for watching my video, I'm so sorry you and your wife had to go through this with your daughter. I can't imagine the feeling of watching someone go through this from the sidelines. It is such a tough and personal battle to go through, I'm so glad to hear that your daughter is so much better. I'm sorry this brought back some teary memories of a bad time, but I appreciate your words of encouragement and support. I hope you guys never have to experience something like this again.
@@BrianNFX Don't be sorry. A lot of our journey with our now soon to be 4 year old was that it took us a long time to understand what she was going through. We had to let her as young as she is do what she needs to do because we can never understand the itch and the emotions she was going through in the worse of times. You said it correctly it is a tough personal battle and sometimes we got in her way of her journey. a lot of reading and talking to other who have gone thought it helped us better understand what our roles should be. You and my daughter and everyone young and old out there who is on this journey are the true hero's. keep it up brother. Seem like you have the right mind set and hopefully support system in place. Have a wonder Holidays and keep us up to date. thanks again.
@@MyHomeGarage Thank you so much, I'm definitely trying my best! I wish you a happy holiday as well!
THANK YOU 😢
I just learned about this … Best news / worst news …
I watched you scratching…. This is exactly ME 😢
your video is so real, thank you for it!! (8 months tsw here)
This is extremely well put together and edited 👍
Pardon my language, but F*CK those dermatologist who don't tell you side effects and prescribed more. My dermatologist told me to used this giant tub like lotion. I don't wish this upon my enemies. We will get through this!
Hahaha, yeah thats exactly how I felt when I got the prescriptions! Hopefully you didn't use the giant tub! I wouldn't wish this on anyone either T.T
Awesome video, you made me cry. Can't believe how hard it'd have been for you to pull this video out while fighting TSW. I'm going throught the same hell right now, and I can't do anything. Btw full support on your recovery Brian, you're a hero. ❤🩹
I'm going through the same. Hope u can do it
Guys I just overcame 18 months of TSW, it was incredibly difficult but please know if you stick with it your efforts won't be in vain. I had eczema as a kid hence the steroid prescription and now my skin feels better than ever before, like actual good skin! Please know there is an end to this torment and you will become yourselves again! P.S Dead sea salt baths reeeaaalllyy helped me the most
You're amazing. Thank you for sharing your story, and for addressing TSW so comprehensively.
I am in month 19 of TSW, and it's been insanely challenging. I have also documented aspects of my journey if you're interested in taking a look.
I am always available if you need to connect with someone who totally gets it.
Thank you so much for reaching out! I’d love to check out your documented journey as well, we gotta stick together since I feel like its something so difficult for others to understand!
@@BrianNFX I agree. One has to have gone through it to truly understand x
@@BrianNFX I consider my back pain just as depressing, so pain is pain and many of us can relate. We will never forget the day before when we were normal, pain free. New life now with pain everyday 6 months in
My daughter is going through it. She's 14. The doctors gaslighted us too.
Hi Brian, so sorry you are dealing with this god awful illness. It truly is horrendous - especially the mornings and evenings. I agree about feeling good when you are on a walk, and when you come home the itch/scratch cycle just starts all over again. You are AMAZING for making this video. How are you now? Would you ever try an immunosuppressant or a biologic like Dupixent? Good luck and lots of love from London! 💕
Thank you for sharing! Wishing you the best on your journey.
Thank you so much!
I really had no idea about eczema and the TSW, thank you for sharing your experience and informing about this personal journey, I do really hope you are doing better now.
I always got curious to see what you were up to but I did not know it was that bad. I hope you feel better soon Brian!
Haha yeah, this was a big project I’ve been working on. Thank you for watching and hopefully when it gets better we can catch up Andy!
Thank you for this, going through TSW right now
Wishing you strength, ease, and a full recovery.
Thank you so much!
stay strong brian youre an inspiration to me and many others
Thank you so much, it means a lot to me that you think of me that way
Thank you for sharing. Please stay strong. I have faith you will recover.
Thank you so much. I appreciate it so much!
we need a part 2 for this video, need to know that he's ok and has recovered. need closure.
I didn't intend to make a part 2, but the journey is still ongoing. Some things have healed while new problems have taken their place. A combination of bad and good has resulted from this journey, and I am still looking for my own closure. In the end, I still don't regret stopping steroids, I just regret starting them in the first place.
Thanks for your video man i know how hard this is im going through it right now and its been a 2 year hard slog and still going thought it now.
2 years… You are so strong, I hope you’re doing better and staying healthy my friend!
@@BrianNFX nope still struggling TSW Fucked!!!
Thank you for sharing. I am going through TSW as well. It is hell on earth.
I’m so sorry you’re going through it too, I can tell you with no exaggeration that it is hell on earth. I wish we didn’t have to go through it but I hope you heal up soon.
@@BrianNFX Thanks. My journey is kind of weird. I was using a steroid cream and steroid eye drop. I had stopped using them in 2020 and my TSW started. I had no idea what was going on and was prescribed more steroids and Protopic for my face. I was bedridden, bleeding, oozing, crusting, itching. I had to use the meds because I had to go to work and function. I threw all of my meds in the trash May 2021. I am officially on Month 8 of TSW. What helps me the most is limiting the amount of water that touches my skin. Water just makes everything worse.
Thank you for this documentary, Brian. I can relate much to this journey, as I've had to deal with sever eczema in certain periods of my life. I was also continually prescribed steroids even when I knew that I should no longer be taking them. The way I first found out about TSW was also through youtube, and through a doctor named Marvin Rapaport. I'm not sure if you've ever had the chance to reach out to him?
Thank you so much for sharing, I hope your healing well
Thank you for watching! Everyday is a step towards healing.
Well done for putting this together. How are things for you now though?
thank-you for sharing, beginning this journey, as well
I was also prescribed steroid cream when I had itchy legs, i didn't think much about as I had no idea that it could led to my skin getting worse if I stopped using it. Then I had a full body breakout, my skin was oozing ... painful ... dry flakes .. etc .. we had no idea what it was, went to the doctors and even went into the emergency department in the hospital. They checked everything, many doctors came in and saw me and i was referred to a specialist in the hospital .. then i was prescribed stronger steroid cream .. lol ... yeah I was "healed" but the "eczema" never went away and I was stuck with using the steroid cream without thinking much about it ... by then I have heard about TSW .. really wanted to stop using steroid cream .. it was hard.. I tried finding natural cream that might work ... now I am finally going to stop using steroid cream and try my best to push this through ..
I wanted to tell you that it is brave of you to share your story. I also wanted to tell you to please stop drinking ensure! It is actually poison for your body and is filled with all sorts of additives that are not good for healing. You can buy very good protein meal replacements that are organic and don’t have the additives like maltodextrin, corn syrups, etc that will help you maintain your protein and nutrient level without filling your body with other yucky stuff. Your body is detoxing and it needs all the extra pure ingredients it can get. You need Whole Foods, organic if and whenever possible. Lots of fruit and vegetables. Pure collagen of all forms. You can do this!
Why aren’t the people known who make these creams.. why don’t we know their names.. the owners, financiers, developers, who approves and certifies, distributors of these creams
Because these creams are affective in suppressing the symptoms in the short run but not in the long run. There are so many medical experts and distributors giving out these creams, if they were to recognize that these consequences are real, then I’m sure patients all over would start suing. So the medical community can’t fully recognize tsw or else they’d be admitting that they’ve been distributing the drugs and have been ignoring those who claimed that it was the creams causing their withdrawal symptoms. They would also be blamed for gaslighting patients for incorrectly using the creams as I have known people who have never had eczema, help apply the creams on others and they themselves grew an addiction to the cream. I fail to believe that this is an eczema symptom, this is a drug withdrawal.
I told myself if I lost my legs I would turn into a laptop businessman. Unfortunately TSW was my wake up call. I hope you’re healed by now.
Thank you for this.
I have a question: what happens when you are free of steroid creams? How do you treat your eczema when you have flairs or breakouts?
Let’s learn to STOP calling it an “addiction” … it is a physiological “dependency” not some hedonistic imperative run amok….
THANK YOU for sharing your story
Eucerin Urea repair works wonders for my eczema
Watch this you dermatologists !!!
I'm also suffering TSW today, and they (dermatologists) never pay attention when i told them if any potential side effects of topical steroid i used for several years, because it's just getting worse (i didn't know about TSW at that time).
They dermatologists think that i'm over the edge, i'm an engineer you're f****n idiot !
Many thanks for your incredible video dear Nguyen. Hope you'll getting healthier every day & never suffering this s***ty 'made up disease' anymore.
God bless you.
I have never had eczema, but I have TSW because of my unknowingly excessive use of Cortizone 10 in which there is no warning label of prolonged usage. TSW is the most miserable thing that's ever happened in my life, and I'm just on the onset of this horrible skin affliction. I went to a Dermatologist about it and she wanted to prescribe oral steroids to fix it. Dermatologists really want to avoid talking about this affliction. Granted, I didn't know that using Cortizone 10 could cause something like TSW.
That’s terrible to hear that you had to experience TSW in the crossfire, while not even having eczema. I’m on the same boat as you, my doctors wanted to prescribe me oral steroids as well. They said it would be my choice to use it or not, but it would at least be nice to have it on hand. I outright refused the offer, I didn’t need that type of naive temptation so in reach to me. I’m happy I never touched it. I hope you’re doing better and thank you for sharing your experience.
@BrianNFX I'm just 6 weeks in, it's spreading and getting worse. Still haven't been officially diagnosed as having TSW, as my dermatologist refused to acknowledge that possibility, but, I know what it is. One question please , while the burning and itching is bad, my biggest problem with sleep deprivation is the unbelievable cold chills. Did you have this problem? I'm currently trying as much as I can tolerate the NM method and have seen a big increase in the cold chills.
@@BrianMcNeese hmm, I try to sleep next to a heater/fan next to me. Whenever I get chills or the sweats, I’d adjust it accordingly. But it’s still a bit hard to regulate my body temp. I found it really difficult for me to do long periods of nmt, I try to take quick warm showers just so it doesn’t complete my dry my skin. But I’m not perfect so I do indulge in hot showers too sometimes 😅
Thank you for documenting this. Those last scratching scenes were intense.
I would urge you to take painkillers, or other meds to let you cope with the scratching. I think you're doing this with a warrior mindset and that can be bad. Even drug addicts take methadone to wean off the heroin. There are treatments like cyclosporine, immunsuppresants that are not steroiods. Also, duplimab seems to take the edge off the itch in many users. Sending healing vibes your way.
Haha yeah, I definitely due take painkillers for the aftermath, since the pain is the only thing that makes me stop scratching eventually. The itch has gone down since I've recorded this so those last scratching scenes were as intense as could be. Thank you so much for your concerns though, I am definitely not the most informed and I'm just sharing my experiences!
Hi brian! Thanks for sharing. I was wondering if youve heard of dupixent?? I was on dupixent for my eczema which helped a ton, but i got pregnant and had to use steroid to manage my eczema… i want to stop steroid but im so scared 😟
Hi my friend. Pls add glutamine powder and collagen protein powder. They are all good nutrients. Search and study it too.
Also watch Rob Stuart vlogs. He is eczema/tsw survivor.
Hope your doing better now bro
Hi Brian, have you tried arginaid instead of Ensure? We give that to people in wound care to help the skin heal
I haven’t! That’s looks alike a really interesting brand, I’d love to give it a try. Thank you for the recommendation!
My fiance is going through it. It's heartbreaking. He twitches in his sleep. He misses a lot of work. Sits nude in the bathroom w a humidifier on him. Takes oatmeal or bleach baths. Feet swell horribly. Knees look like elephant skin.
I’m so sorry to hear that, I can’t imagine watching a loved one go through this. I’ve never tried bleach baths but oatmeal baths are nice every once in a while. Hearing about his sleep connects with me the most, I remember how mentally exhausting it was when it kept me up multiple nights. It really is bad but I hope you guys work through it together, I wish you the best.
I’ve been dealing with yeast/balanitis for the past 4 months. Tried clotrimzole 1% and my urologist gave me nystatin and Triamcinolone Acetonide Cream. Not sure if I should keep using the nystatin and Triamcinolone Acetonide Cream. He said day 10 days and I stopped at 6 days. I’m using it on my penis glands. Not sure what to do.
Hope you get better man
hi hope your much better now. i would stop those supplements and look into/try rosita cod liver oil with thorne zinc pico.
I developed eczema last may, I usually get it in the winter but this time it lasted longer and now I have eczema on my arms, legs, shoulders and abdomen….I go through phases on using steroids creams, Emollient creams make me itch more at night, it’s so greasy for my skin I hate it ! For the steroid cream I use it for 3 days then won’t use it for 2-3 weeks, I’m so scared I wish my eczema goes away.
I’m so sorry to hear that, I would recommend staying away from the steroid creams but I can’t give medical advice, just my own personal experiences with it. Your body should naturally make the eczema go away with time, the creams are usually just to make it easier to live with or suppress the symptoms. Either way, I hope you find a solution and your eczema goes away! Best wishes
I am so sorry, this would be very difficult for you .
Stay strong brother
Is it possible to have problems from maybe a quarter of a tube of betamethazone? I got this for a skin issue a few months ago and it worked. But then I got a terrible excema for the first time. So itchy all over. I used the cream on some of the patches hoping it would help. Now I read that it’s dangerous. My doctor never warned me. A different doctor just prescribed me prednisone for the rash. But I’m not going to take it. I just want this rash to go away. Stay young people!
I wish I knew, I’m not an expert on the condition. Im just giving my experience with it and everything I’ve read/heard about it 😢
I just stopped using steroid creams the other week because it wasn't working, and my skin got a lot worse. I found out about TSW and realised I have it. I threw all of my steroid creams out yesterday and never going to touch that stuff again.
I’m dealing with a flare up and I truly feel ugly
Can you share about the treatment of tsw
How to cure the problem?
Do you know who Rob Staurt is. That guy has helped me out alot. I would recomend his videos.
I do know who Rob Stuart is! He’s a great teacher on having a strong mindset through TSW!
@@BrianNFX I would like to pass this information along because it helped me out alot. When I was struggling with me eczema and IBS. I started a clean diet, taking collagen powder, L-glutamine multivitamin, doing intermitant water fasting, working out and doing coffee enemas. I am not 100% cured yet, but these thing have provided a significant amount of release from the discomfort and pain I was in.
@@punkman1122 That’s great! I used to do intermittent water fasting, multivitamins, clean diet, and taking of collagen powder. Now I just work out and opened up my diet a whole bunch more. I think the biggest thing I got from his videos is to keep yourself busy during TSW, the more things you can do to take your mind off TSW, the less stress and time you’ll have to itch and get bothered by it. I’ve also found that it worked the other way, the less things you have to keep up with, the less stress you’ll have on your body and mind to cause another flare. So I’ve personally dropped some of the routines. I’m glad to hear that you’re keeping up with it and it’s working out so well for you! Thank you for sharing!
How long will this withdrawal process take? It's killing our spirits and I feel like I'm watching my Love die right in front of me and I can't do anything to help.
I have no idea, I am currently reaching my 8th month and I’m still seeing new areas of inflamed skin pop up and ooze. However, there are a lot of spots that have clearly healed for me and returned to normal. It’s a frustrating answer but it’s different for everyone, I’ve heard it’s based off how long you’ve been using topical steroids but I’m no medical expert. Just like you I can’t do anything to help, I have no tips or tricks for making it go away. Just like any other drug addiction, it goes away with time. The best I can say is to find ways to make the ride as comfortable as possible. Even if you could speed up the healing time, it is still a long time and will be mentally draining. I hope the best for you guys, stay strong and don’t let your spirits die.
Why don't you do NMT instead? thats really helping me recover Faster!
Hi. Any updates?
We need an update on your story
Ive been on topical steroids sunce the age of 2 in now about to be 20 and tsw is killing me it hurts so bad idk what to fo at all
Check out The Eczema Detox by Karen Fisher. Our bodies are so far from our balance with eating clean fuel and letting our body heal. Our bodies are meant to heal itself, we just need to eat low chemical and whole food. This book has changed my life and healing through TSW and further.
This is such an informative video. I’ve had eczema my entire life and I’ve used many topical steroids, I was never aware of the damage they cause. Thank you so much for sharing this video.
Is there a reason you stopped taking collagen? Did you ever look into taking it in powder form? It’s really effective for skin elasticity, maybe it can help.
Personally, for the first 4-5 months I did take collagen but saw no difference. I’m sure it works great for others and might even work for me in the later stages when my skin is less inflamed, but as of now it was mostly just a waste of money. Like I said, I might try it again in the future when my skin is already getting better. I’m glad this video was informative to you!