It’s been eleven years since I began my journey through Topical Steroid Withdrawal (TSW). When I threw away every cream, drop, and pill, I was choosing not only healing, but truth. What I didn’t know was the decade-long war for that truth that would follow. I went through literal hell, with my body burning, flaking, shaking. I was oozing out of every pore of my skin, soaking layers of towels underneath me with it. In the beginning, I was in a near comatose state and completely unresponsive. I have been hospitalized another time during my TSW journey for adrenal insufficiency. I lost everything - my body, my identity, my dreams and hopes. I spent years in hiding. At my worst, while still on steroids, I was having seizures several times a week, and was in and out of psychiatric wards, barely clinging to life. I had given up hope on life altogether. I was tired of fighting.

But somehow, despite how excruciating TSW is, it gave me some hope that healing could be possible one day. I held on. Slowly, through Traditional Chinese Medicine, therapy, emotional trauma work, and a lot of patience, I began to heal - slowly but surely. But as both my skin and mind began to repair itself, and the community grew more and more, a lot changed. Although I have been an outspoken advocate since the beginning of my journey, I felt the need to pull away more and more, as I felt the community was straying farther from our original mission and values. In the recent months and years, as more drugs have been developed for eczema, I began to realize something. (And yes, this is just my own personal opinion, of course. Take it with a grain of salt): TSW is slowly being erased — not just from dermatology, but from public memory. It’s being renamed, repackaged, and resold.

Topical Steroid Withdrawal is a pharmaceutical injury

TSW is not rare. It is not misunderstood. It is not just a rare reaction to a medication. It is a pharmaceutical injury. It is the outcome of long-term, continuing steroid use, which has been encouraged and normalized by doctors, dermatologists, and drug companies for decades. And now that the fallout is visible, and TSW has been gaining more attention, they’ve chosen silence. And not even just silence, but spinning the narrative entirely to suit them and their own agenda.

Current treatment guidelines and FDA labels clearly state that biologics (like Dupixent) and JAK inhibitors (like Rinvoq) are intended for moderate-to-severe eczema that doesn’t respond to topical steroids or conventional systemic therapies. 

For example, the FDA label for Rinvoq notes it's approved for patients with ‘refractory, moderate to severe atopic dermatitis whose disease is not adequately controlled with other systemic drug products, including biologics’ (FDA, 2022). Similarly, a 2019 review in The Journal of Clinical Medicine describes Dupixent as a first-line systemic agent ‘for adults with moderate-to-severe, treatment-resistant eczema’ (JCM, 2019).

Popular health media also reinforces this, with outlets like Verywell Health stating that ‘biologics are used when eczema is severe and not well-controlled with other treatments like topical steroids’ (Verywell Health, 2023). In clinical practice, that means they’re promoted as steroids’ next, and supposedly final, stop.” 

But let’s be honest: that describes TSW. Patients deep in withdrawal whose suffering was caused by steroids, are being told it’s just “worsening eczema,” and prescribed new suppressants to manage the fallout. This isn’t medicine. This isn’t healing. This is a cover-up.

Rebranding the harm of Topical Steroid Withdrawal 

Although there’s been a couple of studies out on it, TSW isn’t fully being studied - not even close. It’s essentially being rebranded. The same companies that denied it existed are now selling expensive new drugs to treat its symptoms — while refusing to acknowledge its cause. Instead of admitting fault, they’re pivoting in a more subtle way — and patients are paying for it. 

Organizations like the NEA stay silent.

They hardly name TSW. And yet they partner with pharma — the very industry that caused the injury. Where is the accountability?

Why I’m speaking now

I’ve held this in for a long time, to be honest. I didn’t exactly want to just be branded as bitter and that I am attacking anyone. That is not the truth - I believe these organizations and everything I speak out about have their place. I am just simply speaking the truth how I see it. 

I’m not anti-science and I’m not anti all medicine. I’m pro-truth. And the truth is: TSW is being erased. And if we don’t keep speaking up, it will happen again. It is happening again — right now, with the myriad of new “treatments” coming out for eczema. 

We are not eczema patients who failed treatment. We are the fallout of that treatment. We are not just side effects, and we are not just treatment failures. We are the evidence of what went wrong. TSW isn’t rare — it’s just inconvenient for the system to acknowledge it. So they rename it, repackage it, and sell it back to us. But we remember. We carry the scars. And we’re not staying silent.

Note: The views expressed here do not exclusively represent the views of Materia+ and governing entities.