When someone tells you, “I have a cold,” you know exactly what that entails. They will experience congestion, soar throat, coughing, sluggishness, perhaps even a fever. You offer up a sad face, tell them to bundle up and eat soup, and in a week, they will be all better.
There is always a protocol for how to act when a certain medical trouble occurs. But, when a friend or family member tells you, “I am going through Topical Steroid Withdrawal,” there is no protocol. It is an unknown condition that needs to be recognized in the medical world.
Question: What is Topical Addiction? What is Topical Steroid Withdrawal?
From Wikipedia (and surprisingly accurate) — “Topical steroid addiction (TSA) has been reported in long-term users of topical steroids (users who applied topical steroids to their skin over a period of weeks, months, or years). TSA is characterised by uncontrollable, spreading dermatitis and worsening skin inflammation which requires a stronger topical steroid to get the same result as the first prescription. When topical steroid medication is stopped, the skin experiences redness, burning, itching, hot skin, swelling, and/or oozing for a length of time. This is also called ‘red skin syndrome’ or ‘topical steroid withdrawal'(TSW). After the withdrawal period is over the atopic dermatitis can cease or is less severe than it was before.”
It sounds less painful than it actually is for TSW sufferers. It is debilitating.
In addition, there is no cure, and the length of TSW is indefinite. Some are lucky and it passes within 6 months. Others have endured the pain for 7 years. The length usually correlates to the potency of the steroid used and/or length of time it was used. This is not always the case.
ITSAN.ORG (International Topical Steroid Awareness Network) is a tremendous resource for TSW sufferers. There is a page that answers many questions regarding this condition, including what the main symptoms can be for TSW. Some include edema, enlarged lymph nodes, and hair loss.
However, aside from the science, Topical Steroid Withdrawal is a prison sentence. All who are found guilty are merely victims. Our lives are abruptly halted and we await the day our lives can be lived once more. The many mundane things that people take for granted are far out of our reach at times–
Hugging a friend. Picking up your child. Staying outside. Kissing your partner. Putting on clothes. Washing the dishes. Smiling. Falling asleep even when you are completely drained. Attending a party or wedding. Holding a job. Getting a massage. Standing in a line without being stared at. Performing push ups. Wearing a tank top. Washing your hair. Dawning jewelry. Painting on make-up.
The list could go on.
What I find hardest about Topical Steroid Withdrawal is how lonely it can be. Since it is such a novel condition, many treat it like a cold: something short lived and mildly irritating. It is anything but short lived, and the pain it causes, physically and emotionally, is overwhelming. In the medical field, you are hard pressed to find physicians and dermatologists who are willing to help without the use of MORE steroids.
That is why I hope to start a dialogue. Many TSW sufferers are starting to share their stories and their gruesome pictures. It’s not easy. It’s extremely difficult showcasing our personal pain. But that’s the only way to get the public’s attention. Talking about it isn’t enough. We have to SHOW the damage. And we will not stop until this is seen as a true medical condition.
One thing I will say is that steroids have their time and place. They are very important. But, they are also being used as dangerous bandaids — masking the problem while creating an even bigger one underneath.
Visit ITSAN. ORG for more stories and information on Topical Steroid Withdrawal. There is help.
International Topical Steroid Awareness Network
Love, B. R. Wren
33 thoughts on “Topical Steroid Withdrawal”
I am literally getting emotional reading about your story, I have only started my journey in TSW 2.5 months in to be exact, I can understand that if you don’t want me to feel sorry for you I can totally understand that, but in situations like this it comforts me greatly to know that we are not alone, one thing that helps me a great deal is to see this as a challenge that we are surviving and we will continue to do so until we see it through.
Thank you for giving the courage to carry on.
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Thank you hun. Just know it does get better! I’m 10 months now (doing a post for monday) and I’m getting much better. Definitely get checked to see if you have a bacterial infection or fungal infection. I had fungal growth and my itching is way down since finding out what type it was and using the correct medicine for it. TSW will still ensue, but I think the journey will be easier xo just keep that chin up.
Thank you for the advice, I do plan on seeing the doctor soon (I just hope to god they do not try pushing topical steroids to me)! Exactly it can only get better from now on.
Hello Briana ,
You are really a very Strong Person enduring all this pain!i trully admire you! i have been following your Journey all this Time and i must say although you suffer soooo much , your AMAZING humour ( i love your videos !!!!) and your family helped you so much, you have Great support !!!! but i really wanted to ask you (if its ok of course) about your history and usage , that led you to TSW! i have also unfortunetely used steroids, fucibet on my Face for 1 1/5 years but To be honest never went to TSW ! ( stopped them in August 2015 ) . I was Lucky in that case ,but dont Know about the damage i caused to my skin 😦
Anyway i Wish you all the best and i know that this nightmare will soon be over !!!! Thank you and all Those People for making those Blogs and Talking about this Problem , as well as raising awaireness ! you are all inspiring People to me and now that i am studying Medicine , Reading all those Stories helped me Understand how important it is to really Care for the patient . So when i finish medicine School , i promise not only to really listen to the Patient but i have Decided to study further about this condition and if i am clever enough even join Programms and studies contributing to find new safe drugs/ solutions for eczema and Other conditions. Probably being also a victim has lead me to deciding what i want to do in my future.
Please keep writing about your journey and ,inspire more People and future doctors with your Story in Order to prevent further TSW or any Oher sufferes from drugs/ doctors Mistakes !!
PS. doctors should understand that a smile and a ” thank you ” from curing a patient is the most precious Thing – much more important than being rich
I’m glad this didn’t happen to you! So happy. I used topical steroids on and off for three and a half years + Protopic as well. I had also used over the counter hydrocortisone throughout my life but nothing major just here and there when I needed it. I started having a weird skin rash on different places on my body and when they would give me a steroid pack I get better but as soon as I went off I’d flare again.
So glad you’ve taken the time to look through all of this and get extra information for your future patients
Hello, I want to tell you I wish you my support. My body looks almost the same like yours… I have the support of my family, sometimes it got worse, but I got pregnant and it got very bad, so I went on it, doctors told me to and I wanted to go to work till it was possible. One month before my daugter was born, I was in hospital, they just gave me steroids 😦 so after I got home, I was without it, on diet (against candida, without milk, sugar, wheat) and it was terrible. I gave birth oozing and bleading and they had to change the bed things every day. So I got steroids again, used it for 3 weeks and now it is 5 weeks without it again… Terrible…4 weeks I was at my parents but now… I am back at “home” and yesterday and today it was 3 + 3 hours in bath… I cannot take care of my baby 😦 and just pray she won’t have this shit… I use zinc creams, but sudocrem makes me so itchy! Thank you for this blog, I will write about it also.
Oh my dear, I am so sorry to hear this. I am very happy you have a support system. Such a tough road
Zuzana, you are not alone… I went through the same thing. I’ve had eczema all my life but was clear for about a decade until I got pregnant at 3 months. I oozed and bleed did not feel comftable at all at the hospital when given birth. Would take a shower often and actually did not want to lay on the bed because everything hurt. My daughter is now almost 9months I am still red bleeding oozing itching and everything. I have it at 95% of my body where you can only see my true color on my palms of my hands and soles of my feel. I also cried because I couldn’t take care of my daughter, I couldn’t breastfeed which make me feel like a horrible mother. Sometimes we just need to take to people who really understand what we go through…
I’ve been going through TSW for about 5 months now. It got so bad that I graduated high school and wasn’t able to attend college this fall. Your videos are an inspitation. It is comforting to know that someone else is going through the same thing and still smiling. I have been getting better recently, in part due to how I’ve dealt with the itching. I realized scratching is a habit just like anything else. Our habits reflect what we think about ourselves. If someone was told that they’re fat and their own self image becomes or matches that, they will establish habits that will actually self actualize the gain of unhealthy weight. It’s like a self fulfilled prophecy. I began to change my self image, and held myself accountable for scratching. Everytime I start scratching I set a timer on my phone for a short amount of time. 2 minutes or less. When it goes off and I hear the loud sound, I stop, it’s like conditioning myself. I rarely scratch myself anymore. My skin has dramatically improved. My arms used to have red breaks through them and now the skin feels smooth. I now have mobility to go out and exercise and enjoy life, even in this freezing weather. My skin still peels and sheds but I feel like I’m really on the road to recovery now. Feel free to include this tip in one of your videos.
That’s a wonderful tip, DJ. Thank you for sharing. I hope you have a speedy recovery and can get back to a full life. And I’m sorry you had to halt college, but think of it as time to reflect. That’s what I’m trying to do. Sending you my best. Thank you so much for watching my videos and finding them comforting.
I just want to say that I feel immense empathy for you. I must admit I felt a little bit crushed tonight when I saw how much you’re still having to endure over a year into TSW. Not so much for my own prospects of recovery, but just for everyone having to go through this for such a long time.
I spent all of 2015 visiting my primary care, multiple dermatologists, and an allergist trying to figure out why steroids weren’t fixing my ever worsening eczema-like skin symptoms that began late 2014. Thanks to the steroid potency link you posted, I’m quite sure the super-potent Betamethasone Dipropionate 0.05% I used for work related hand eczema for 3+ years prior played a major role in developing the TSA.
I just hit 1 month of complete cessation of corticosteroids (and Elidel). It’s been tough. I’m not sure how long this road will be for me, but I want to thank you for being strong and demonstrating such mental strength and perseverance.
I know this is a lot to ask, but are you open to any kind of messaging correspondence? If not it’s totally okay, I just have a lot of questions about approaches to getting medical support, Dr. Rapaport, going out on disability, etc…
Thank you for such kind words Elliot. I’m so sorry you are on this journey =( as far as questions, are you on Facebook? I highly encourage you to join 2 of our support groups. You can post questions and tons of people give feedback! I’ve learned so much from them.
Thanks for the response Briana. Yes, I am on Facebook: facebook.com/enwave.
I’m definitely interested in the support groups.
I’ll find you, friend you, and ask that you be added to the groups =)
I just wanted to say thank you for being sharing your journey – I am two weeks into TSW, but I actually found your videos months ago when I was questioning why my rosacea like / eczema keep going from bad to worse over the course of the last 9 months.
Six dermos, multiple forms of TS and hundreds of dollars later I finally met my latest dr who took a look at me and said – you have steroid induced rosacea and eczema and with that one statement, I decided to give TSW a go, properly. In the past three months I had made half hearted attempts to do it but shied away from it after a week or so, giving into the need to “put the fire out” whenever my skin got rashy but enough is enough!
Two weeks in, I am freaking out a bit but so, so immensely grateful that others, like yourself have chronicled your journey, and I’m so glad I’m not alone! I am extremely red, and itchy and worried I will be walking down the aisle in less than five months in this skin but I know this is the best course of action for me!
Your videos have cracked me up when I’m sitting here in the middle of the night at our kitchen table trying to a. plan our wedding and b. stop the itching and c. trying to google as much as possible about TSW. (As a matter of fact I’m doing exactly that right now :/)
Like Elliott above I’d love any support I can find as well so if you could add me I would be ever so grateful! (www.facebook.com/lulu.xo)
A friend of mine found you’re YouTube channel and sent it to me. I’ve just recently started my withdrawl procesas. Just got through my sixth week, although I will admit it was the toughest 6 weeks in my life. Your videos along with the help of several other blogs and testimonies have definitely allowed me to come to peace with what’s happening to me. These resources pulled me out of a dark place and have given me a much better outlook on how things will turn out in the long run. I too share that light hearted ness you displayed in your videos and they have definitely helped bring some of that back into my personality. I appreciate you documenting the progress because it has been such a great resource to myself and countless others. Keep up the great work and hope your healing process is going well.
This made my day, Nelson, thank you. Today is the start of a documentary process as well. I want to keep making as much noise as I can so a friend and myself are going to draw up a business proposal for a TSW documentary. I want to change the world for the better, and with everyone standing together through this, I know that we can. Keep fighting hun. It does get better, even if it is slowly.
Thank you for such a swift reply! If there is anything I can do to help out with the TSW documentary once the ball gets rolling, please let me know! I would love to help raise awareness for this condition as, like you said, I would never wish this upon anyone.
I appreciate this =)
THANK YOU FOR THE SUPPORTIVE DOCTORS LIST.
I’m a mother who is desperate watching her 3yo daughter start TSW – we are 4 weeks in and it’s not only harrowing seeing what she’s going through (and wondering if it will get worse, and how long it will go on for) but equally as distressing that I’m not able to get support.
Derm after derm and GP after GP have told me ‘you are putting your daughter at risk of further harm by not giving her steroid cream – the best thing you can do as a responsible parent is give her relief with topical steroids’. And they write a script.
I don’t know if I’m doing the right thing taking her off topical steroids – I might be doing the wrong thing. I might be doing the right thing. All I can go by is my gut feeling which is telling me that she has TSW….which supposedly does not exist?!?
After finally deciding to withdraw her from all steroid creams, I’ve been tearing up the net trying to find how to relieve her symptoms and how I can get the medical care and attention she needs as a companion to the withdrawal journey – and thanks to you and your list, I don’t need to go from doctor to doctor to doctor, paying up to $200 per consult (we’re very far from rich but I’d beggar myself to get her the help she needs), just to find a Dr who will listen with an open mind and possibly help us.
After exposing my most precious thing in the world to a substance addiction – I need to make this up to her by absolutely doing this thing the right way from now on.
With tears of gratitude in my eyes – literally – thank you.
(and sorry for the essay – but this is the first page where I’ve found some concrete hope for me and my little one and it kind of overwhelmed me.).
I’m so happy this has helped you. Dr. Lio, who lives in Chicago, IL, has been a huge supporter and I bet you could have a court with him over skype or over the phone. There is also a support group through Facebook (ITSAN) as well as their own website (itsan.org) that has great resources! I can’t imagine how difficult this is for you to watch, but I send you a huge hug and lots of strength!!! I have youtube videos as well under Briana Banos. They may help as well as give you a smile xo
My name is Megan Snipes and I am a high school senior at Kamehameha Schools Maui. For my senior project, I am combining other videos on YouTube to create a message about dangerous chemicals that are in certain products.
Would it be okay if I used the last picture for my video?
I need to post these by September 1, 2016 so if I don’t hear from you by that date, I will take that as a consent.
If you have any questions, please feel free to email me back at firstname.lastname@example.org.
Didn’t see this until now, but yes, you may take my last photo. I hope your project went well.
Briana, I hope you are doing better!
I want to let you know my son’s severe eczema got better when I stopped using detergent on his clothes. He was reacting to even the free and clear stuff. I switched to soap nuts and saw an immediate improvement. His skin got 95% better in a short time. Hope it helps, Sierra
Hello. I have read up on your journey and each and every comment, wow. I applaud you guys for keeping on. I am so so terrified. I have been using topical steroids on and off for 6 months. It stressed me so much that i keep getting a rash after 4 to 5 days of applying the cream. I have decided to stop using them its been 5 days now. My skin started itching horribly today, with a rash. Does anyone know the severity or the duration of TSW after 6 months of use? Can it take a year to get better or less? I read that it can be 10 to 30% of the time one used the topical creams. If anyone has experienced this or know of anyone please advice. Thanks.
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You should join the ITSAN group on Facebook! ❤️
Hey I was just wondering does it ALWAUS spread over all your body or can it just be your face etc? My steroid I used for 1 1/2 years was daktacort cream and only used on my face every night. so I’m wondering if you could share knowledge as I’ve just found out about this.
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Hi Char, so sorry for the late reply. When it comes to TSW, anything is possible honestly. Some only have local redness, while others have it spread. I do have a Q and A page on brwren.com for those who are just starting out 🙂
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Hi Briana (and all TSW and Eczema sufferers), Please check out the book: The Eczema Diet by Karen Fischer and her newest book: The Eczema Detox – an Eczema Expert and Nutritionist from Australia. I am also dealing with TSW and in month 11. I feel that I am in the last stage of this detox. Karen also has a website:
I can’t believe how long you are dealing with this horrible condition. Also, I’ve researched a supplement that can speed up your detox called: Calcium d-glucarate (from a health store or online). Please read Karen’s book because it is helping me when I follow the diet. I will keep you in my prayers. I like your upbeat yet honest youtube videos.
You can email me if you want some emotional support. God Bless, Sharon
PS This is where I should have posted my comment. Also, your liver needs support. I can explain better by email, if you need someone who understands this condition to talk to.
(oops – Sharon again) My email is: email@example.com
I appreciate you Sharon. I am glad it is helping you, but in my opinion, this is more than just diet. I have tried many diff ‘eczema’ diets. If it helps some, amazing! But it’s not for everyone and I don’t want to tell people it will help or cure them. xx
‘Ow Do Briana,
Writing from Inverness in the Highlands of Scotland.
I have just watched your documentary whilst supposedly trying to ‘work from home’ in the days of CoronaVirus Lockdown. What an emotional piece of work, I watched it on my own whilst my good lady and kids were homeschooling – what can I say… WOW, extremely emotional… I am not the only one!!!
I have now found your blog and looks like I have a lot of reading to do ;o)
THANK YOU for giving me the ‘light at the end of a tunnel’
I have so many questions, as does my wife so hopefully you wouldn’t mind us contacting you directly in the near future.
Take care, Keep Smiling and stay safe
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I try to post as much as possible, since much of what i write answers many questions ppl usually have =)
Im glad the documentary spoke to you! ❤