A while ago, I had reached out to some people who were going through Topical Steroid Withdrawal (TSW) to see if they could share a blurb about what it’s like to go through TSW/Red Skin Syndrome.
I asked them to answer this one question:
“You know you’re going through TSW when ______” (fill in the blank)
Here are 35 things that TSW sufferers shared that they stopped using topical steroids for eczema.
*Please note that the symptoms of TSW can vary widely. Some of the symptoms below can apply to anyone who has severe eczema as well, since there are similarities (so you may notice an overlap in symptoms mentioned).
Just a quick background on TSW:
If you haven’t read my in-depth post on TSW, you can read more info on it here.
If you’re not too familiar with Topical Steroid Withdrawal (TSW), it is also known as “Red Skin Syndrome,” “Steroid Induced Eczema,” or “Topical Steroid Addiction” (TSA). This often happens when an individual overuses a topical steroid for eczema (usually a cream) and experiences the negative side effects when it’s withdrawn.
Common symptoms include (and are not limited to) weeping, burning, and intense flare ups when steroid cream is discontinued. Some people also experience swollen lymph nodes, chills, and swelling in other areas of the body.
Here are 35 things that TSW sufferers shared:
You know you have Topical Steroid Withdrawal (TSW) when….
1. Its a sunny, hot day and you’re in long sleeves and trousers.
2. You itch onto any dark surface to watch to see how much skin falls out (gross, but so true!).
3. Scratching is the only form of exercise that you do.
4. It snows indoors every day!
5. Your family has your skin on them.
6. Your lymph nodes are swollen (even possibly as large as golf balls!)
7. Your eyes are swollen.
8. When you know the stares are not one of admiration.
9. You say you’ll go to the bathroom but actually you hide there, take off your pants and scraaaaatttchhhhh your knees!!! Oh, the relief.
10. When you see ppl with beautiful skin and think to yourself, I’d do anything to have skin like that!
11. You have to vacuum your sheets…
12. The thoughts of dressing up to go out makes you shudder.
13. You feel like you have a sunburn but haven’t been outside in ages!!
14. Having to explain to strangers what TSW is becomes a daily occurrence-because you look like a burn victim in public.
15. Not a single day goes by when you don’t obsess over skin, your own, or someone elses.
16. You stick your face in the freezer to stop yourself from overheating, yet you’re also notorious for taking scorching hot showers for relief.
17. You’re wearing red sleeves but no shirt!
18. When you’re thankful that you’re in the “flaking all over the place stage” because the ooze stage is such hell!
19. “When your parents have to sleep holding your hands to prevent you from scratching your skin completely off!”
20. Even tweekers stop to take a second glance!
21. You spend all your goddam time on support groups (even Facebook support groups) looking for answers.
22. When you blow on your skin and it starts snowing.
23. Your body goes through rapid temperature changes – sometimes you’re hot and sweaty (or either you get the chills).
24. Scratching feels so good….
25. It’s so hard to get a good night’s sleep…
26. You learn all about how ‘leaky gut‘ is tied to your condition.
27. You keep wondering if you’ve reached the end yet….
28. You can’t wait until this is over (seriously, when is it over?!?)
29. You’re scared at the reaction people will get when they see your skin.
30. You feel moments of excessive sweating (or either excessive chills that come and go).
31. You wake up with skin flakes on your bed and you feel like your morning has already started off on the wrong foot.
32. You feel tingling under the skin (and it feels like ants crawling under the skin)!
33. Your diet has changed because of this. Wait, no, your whole life has changed because of this!
34. You keep seeing people talk about moisture withdrawal. It seems so damn hard to do, but it seems to help (for the majority of people!)
35. This has taken up your whole life. Sometimes you don’t want to inconvenience people by talking about the same thing again and again.
Are there any other things that you’ve experienced or can you relate to any of the symptoms above? Comment below!
Biography
Abby is a Registered Holistic Nutritionist who helps clients achieve optimal health. She is passionate about seeing people use health and nutrition to transform lives. She hopes that her experiences and knowledge can help educate others on natural remedies that will help eczema. Follow her on Twitter, Facebook, Pinterest, Instagram, orYouTube for more updates!Disclaimer: All the information found on this website should be used for informational purposes only and is not intended to replace proper medical advice. Always consult a qualified health care provider before embarking on a health or supplement plan.
I really like this post doesn’t make me feel as alone. :)! I struggled with rosacea and that has gotten a whole lot better as I am on my own journey. Now I’m just dealIng with a couple of itchy patches on my face. That comes and goes. So this is why I’m on your blog.
I hope your patches get a lot better!
Oh my goodness!! This is me and the countless others that steroids have impacted. This last year I took two courses of prednisone internally and I’ve had all these symptoms. My face arms and neck have been red and itchy going on over a year. It’s absolute hell!!
Everthing listed on this post goes away. It will stop! There is hope. It has been one year and 1 month since we stopped all the eczema medication for my daughter and started healing her gut. After the 6th month we really felt that her skin was healing. Her eczema is not gone completely, she still has some healing to do, sometimes she still itches like crazy but all the redness, oozying and the worse part is gone. Hang in there everyone!
P.S. She used to drool at night a lot when she was having withdrawal symptoms. Her pillow ysed to get very wet.
Cheers
Mev
Wow that’s amazing, Mev! Thanks for sharing your story. So encouraging and glad your daughter has healed so much. You’re an amazing mom!
I can totally relate to all these things especially the taking over your WHOLE life thing!! The feeling of ants crawling under skin & massive swollen glands! It’s been 10 months for me now of TSW from using Betnovate scalp application on & off for over 30 years! Along with all the other topical steroids & anti-biotic a I had thrown at me from the age of 7 !! Anyone else out there in their 40’s & in same boat as me? The medical profession weren’t aware back in the 1970’s of the impact the long term use of topical steroids would have on children later in life! Im really struggling & now been given strong anti-bios as its ruining all my relationships-with partner, family, friends & work! Any suggestions on other routes of mental health therapy greatly welcomed!
Hair loss is common. One person said they could give themselves a bikini wax just by pulling. Also sleep of one hour per night in the early stages is standard.
Thanks for adding that in. That’s so true too. 🙁
How long does all of this last? What are the weekly monthly stages of withdrawal? I’m trying to figure out what to expect. Do I needd to plan a year of disability?
So glad I read this! I’m only two weeks into withdrawal and my whole body is now completely covered in the red rash. Was starting to get worried about the aching glad in my groin but it makes sense if your glands are going to swell in the process. Struggling but have such a supportive husband. Just hope that my workplace will be just as understanding if it gets any worse! Hang in there people, we can do this!!!!
Thanks for sharing this post. Is TSW necessary or should one slowly uses less steroid together with proper diet and should not go cold turkey with using steroid?
I have been using steriods since I was a kid and I am now in my 30s. I know steriod cream isn’t good for you but I am afraid to stop using it altogether. Is slowly cutting off the use of steriod an alternative? Thanks so much for your advice.
Hi Joey! TSW is hard but will change your life for the better in the long run! People usually stop cold turkey since slowly cutting of only delay the symptoms and won’t help. You can go on the facebook support group if you have further questions I’ll be our pleasure to help you out!
When you go to work with a backpack full of straight up moisturisers and consider buying stock in vasiline
OMG this is me!