If you’ve never heard of topical steroid withdrawal before, where have you been? I’ve been banging on about it now for over six years… TSW is a very complex condition that happens after the use of topical steroid creams cause rebound flares, and worsening, spreading eczema, which is no longer improved by these creams. The result is a catastrophic breakdown of the skin and can cause life-threatening side effects. This blog, from ITSAN is our battle cry because we’ve had enough of being ignored, belittled and mistreated. Here are ten shocking truth bombs that will leave you reeling:
1. Cases of topical steroid withdrawal are growing day by day
For decades, people have been sounding the alarm. Medical journals first documented TSW in the 1970s – yet most doctors still deny it exists. No warnings. No accountability. Just more harm. The truth has been out there for over 50 years, yet hardly anything is being done to prevent TSW. That’s not a mistake – it’s a systemic failure. Diplomacy alone isn’t working. That’s why ITSAN is stepping up – igniting a Global Uprising to push for urgent change. They need every one of us to join in. The TSW Action Hub is where we unite, raising our voices to speak the truth. Alone, we’re easy to dismiss. Together, we’re impossible to ignore! Join the fight: actionhub.itsan.org
2. 80% of TSW cases are dismissed by doctors
When will they believe us!
Even today, most doctors refuse to acknowledge TSW. Over 80% of patients are dismissed, told their symptoms aren’t real, or misdiagnosed entirely. This disbelief leaves people isolated and suffering without support. The medical system is failing the very patients it’s supposed to help – ignoring the truth and turning a blind eye. Diplomacy alone isn’t working. That’s why ITSAN is stepping up – igniting a Global Uprising to push for urgent change. They need every one of us to join in.
3. Patients aren’t being warned of TSW risks!
Informed consent matters!
For too long, people prescribed topical steroids have been left in the dark about the serious risks of Topical Steroid Withdrawal. Without clear warnings or informed consent, countless patients have suffered needlessly. This isn’t just negligence – it’s a violation of trust. Informed consent isn’t optional. It’s a fundamental right. Patients deserve to know the truth before starting treatment – so they can make decisions about their health without hidden dangers. The medical establishment’s silence has caused unnecessary harm.
4. TSW has over 2 billion views on TikTok
How is this still considered “rare”!?
#TSW has exploded on TikTok, with over 2 billion views and thousands of people sharing the same painful reality. It’s not a coincidence.
This is a Global Health Crisis hiding in plain sight – and the lived experience of millions is being dismissed as “anecdotal” or “misinformation.” Meanwhile, people continue to suffer without answers, without support, and without acknowledgment from the very system meant to protect them. The truth is out there – louder than ever. But the medical establishment still refuses to listen.
5. Topical steroid packaging hides the worst risk
Where are the warnings?
Topical steroids are handed out every day, often without a second thought. But there’s something missing from most tubes: a warning about Topical Steroid Withdrawal. TSW is one of the most serious risks of topical steroid use, yet most packaging says nothing. No mention of possible harm. This silence isn’t harmless – it’s dangerous. Patients deserve transparency. They deserve to know what they’re using, how long it’s safe, and what could happen if they keep applying it.
Without clear warnings, the cycle of misdiagnosis and suffering continues. It’s time for that to change.
6. TSW is an ongoing crisis with next to zero research
Why isn’t TSW being researched?
Topical Steroid Withdrawal is devastating lives. It’s not rare. It’s not new. And it’s not going away. But despite the growing global outcry, the medical establishment refuses to fund or conduct serious research into this condition. Where’s the interest?
Patients are suffering. Doctors are guessing. And still, the silence continues. No large-scale studies. No urgency. No accountability. Why?
Without real research, there can be no diagnostic codes, no treatment protocols, no path to recovery. It leaves people trapped – dismissed, misdiagnosed, and isolated. This isn’t just neglect. It’s systemic failure. We won’t stand idly by while drug companies and the medical establishment turn a blind eye.
7. Only a few brave doctors speak up about TSW
Why don’t more doctors speak up?
A handful of doctors have had the courage to speak out about Topical Steroid Withdrawal – to validate their patients, challenge the system, and face professional pushback.
But they are the exception.
Most doctors remain silent. Whether out of fear, pressure, or disbelief, they turn away from the truth – and in doing so, leave patients to suffer without recognition or support.
This silence isn’t harmless. It keeps TSW buried. It keeps treatments unsafe. And it keeps millions from getting the care they deserve.
If more doctors won’t speak up, then we will. Loudly. Relentlessly. Together.
8). 71 million people could be headed for TSW
Millions may have TSW
71 million people worldwide are thought to be living with the devastation of topical steroid withdrawal right now. Let that number sink in.
A study published in 2000 found that around 12% of people prescribed topical steroids went on to develop TSW. That’s almost 4 million in the U.S. alone!
And when the establishment contests these numbers (as they will) – we say, the burden of proof is on them.
These aren’t just statistics. They’re real people – suffering, isolated, and gaslit by a system that refuses to face the scale of the harm.
9). Topical Steroids are for short term use
TSW should never happen!
Topical steroids were only ever approved for short-term, non-continuous use. Yet millions of people are prescribed them for years – even decades – to manage chronic skin conditions like eczema.
Most steroid labels advise using them for no more than two weeks. No max dose. No long-term safety data. No monitoring. And yet, the average adult with eczema has used them for over 15 years.
This isn’t an oversight. This is systemic failure. The FDA approved them. The American Academy of Dermatology keeps silent. And no one seems to be watching what happens next.
No other prescription drug is handed out like this — with next to no monitoring of cumulative effects and zero long-term accountability.
What can you do about this?
Diplomacy alone isn’t working. That’s why ITSAN is stepping up – igniting a Global Uprising to push for urgent change. They need every one of us to join in.
The TSW Action Hub is where we unite, raising our voices to speak the truth.
Alone, we’re easy to dismiss.
Together, we’re impossible to ignore!
Join the fight: actionhub.itsan.org
Personally, I’ve finally given up visiting my dermatologist. He just doesn’t care, in fact describing one prominent derm who speaks up about TSW by saying, “he talks too much…” Actually no, he’s not talking enough. It scares me that our specialists lack the curiosity to listen to patients who report side effects. Instead continuing to prescribe new drugs to someone too terrified to trust any more. I have turned my back on mainstream dermatology, I just don’t think it’s fit for purpose until these drugs are used with the caution they rightly require. I always wonder whether all my allergies had been diagnosed sooner I would not have been prescribed years of topical steroids while I continued to work out what was going wrong, because the steroids always stopped working.
I’d love to hear your myths and truths. Have we missed anything?
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