What the New Topical Steroid Withdrawal ICD-10 Code Really Means

ByNina

This is about the new ICD-10 code for TSW (Topical Steroid Withdrawal), and what it does and doesn’t do.

It doesn’t hold the truth of a disease. It holds what a system has agreed to let itself see.

Here is what that looks like, in practice, on one page of one federal document.

Page 158. Two paragraphs, one after the other.

The first says the cells are producing too much of a chemical they shouldn’t be. That something in the body’s chemistry is breaking down the wrong way, causing a specific kind of pain no eczema patient reports. That the burning, the flushing, the way the skin can’t regulate its own temperature — these are distinct enough to diagnose on their own. It points to a study published four months earlier. In plain terms: this is not eczema. It is something else, and here is the proof.

Here it is, exactly as it appears in the federal record:

“In a recent study, discoveries show that TSW is clinically and biochemically distinct from atopic dermatitis in that the condition uniquely involves an overproduction of mitochondrial NAD+ and excessive breakdown of tryptophan causing neurologic pains while shared features include the microbiome and IL-4/IL-13 excess. Major diagnostic criteria derived in this study include burning, flushing, and temperature dysregulation.”

— ICD-10-CM Coordination and Maintenance Committee Meeting, September 9–10, 2025, p. 158

The second paragraph, three lines down, describes treatment:

“The management and treatment of TSW focus on symptom relief and promoting skin healing. Strategies include gradual tapering of TCS, regular use of moisturizers and emollients to repair skin barrier and alleviate dryness, wet wrap therapy, dupilumab, psychological support and lifestyle adjustments. However, no current therapy appears to offer more than symptomatic control.”

— same document, same page

Dupilumab calms one part of the immune system’s response — the IL-4/IL-13 signal. The same signal the first paragraph just called a shared feature with atopic dermatitis, not what makes TSW different. The paragraph ends by admitting that nothing currently offers more than symptom relief.

One paragraph spent proving TSW is a different disease. The next treated it like the same one.

Nobody wrote this to deceive anyone. That’s what makes it worth stopping on.

A number like this is called a code. Every diagnosis in American medicine gets filed under one, and the code is what makes that diagnosis visible to the rest of the system.

Here’s what it does. It lets a doctor bill insurance for treating you. It lets a hospital’s records say what you have, not just what your symptoms are. It lets a researcher pull up every patient who’s ever had it, and count them, and study them as a group. It lets a health agency track how common something is, and whether it’s getting more common.

Here’s what it doesn’t do. It doesn’t treat anyone. It doesn’t cure anything. It doesn’t even certify that a condition is real — plenty of well-established diseases went years without their own code, and plenty of codes exist for things doctors still argue about. A code is just a place to put people, so that everyone using the system can find them again.

For over a decade, there was nowhere to put people with TSW.

For most of the time TSW has existed as something patients recognized in themselves, it had no code of its own. It lived filed under atopic dermatitis. Under generic reactions to a drug. Under nothing specific at all.

This didn’t mean doctors couldn’t see it happening in front of them. Some did. It meant the system couldn’t see it happening across a country. No agency could pull the numbers and say how many people this was affecting, because there was no number to pull. No researcher could study “TSW patients” as a group, because as far as the databases were concerned, there was no such group — just individual cases of eczema that happened not to respond the way eczema was supposed to.

A decade of people living through something real, and the only proof of it was what they said about their own bodies. That’s not nothing. But it isn’t the same as being counted.

Getting a code isn’t a form you fill out once. It’s a proposal, brought before a federal committee, argued over, revised, and brought back — sometimes more than once.

This one went through three rounds. March 2024. September 2024. September 2025. Each time, it came back changed.

Watch the name alone.

March 2024: “L30.81 Topical steroid withdrawal syndrome“ September 2024: “L30.81 Topical steroid-induced chronic dermatitis“ September 2025: “L30.81 Chronic dermatitis following topical steroid use“ — with “Topical steroid withdrawal” and “Topical steroid withdrawal syndrome” now listed as index terms underneath it, alongside “Red skin syndrome”

— proposed tabular modifications, ICD-10-CM Coordination and Maintenance Committee packets, March 2024 (p. 100), September 2024 (p. 123), September 2025 (p. 158)

Three versions. Three ways of saying what this is. Each one a little further from where it started — from its own named syndrome, to a caused dermatitis, to a dermatitis that merely follows steroid use.

And even then, it wasn’t a clean yes. Kelly Barta, ITSAN’s president, later described it this way to Dermatology Times: the code passed after three formal reviews and a vote that split the reviewing board fifty-fifty, ultimately passing with support from the American Academy of Dermatology.

Something new showed up in that last version, in September 2025, that hadn’t been there before.

A study, published four months earlier, found that something in the body’s mitochondria — the parts of a cell that produce energy — was overproducing a chemical it shouldn’t be overproducing. The same study connected this to a specific kind of pain, a kind no eczema patient reports. It gave the condition something it never had before: a mechanism. Not just a description of what it looked like, but an explanation, at the level of cells and chemistry, of what was actually happening and why it was different from eczema.

That paragraph is very likely why the code exists at all. A committee split down the middle doesn’t usually change its mind on testimony alone. It changes its mind when someone hands it a mechanism.

So the science arrived last, after a decade of people describing symptoms nobody could explain. And it’s the reason any of this got written down.

None of this happened inside one office. A federal research lab studied the mechanism. A patient organization filed the paperwork, because federal researchers legally couldn’t file it themselves. Other patient groups signed on to back it. A professional dermatology association had to be persuaded before the committee would approve it. And even after all that, the agency that runs the code system is a different one from the agency that regulates drugs, which is different again from the agency that funds the trials that would prove a treatment works.

Every one of those organizations did its part reasonably well. And none of them was in charge of the whole problem. A code can move through the system that makes it real without a single one of them being responsible for what happens to a patient the day after it takes effect.

That’s not a conspiracy. It’s just what happens when a disease has to pass through this many separate hands to become official, and every hand only holds one piece.

So go back to page 158. Read it again with all of this in view.

The paragraph about mitochondria and NAD+ is the ending of a decade-long argument. It’s the piece that finally moved a divided committee. It says, in the language of cells and chemistry, what patients had been saying in the language of their own bodies for years: this is not eczema.

Three lines down, the paragraph about treatment hasn’t moved at all. It still says dupilumab. It still calms the same immune signal the mitochondria paragraph just called a shared trait with eczema, not what makes TSW its own thing. It still ends by admitting nothing works especially well.

The document argued its way into a new identity and left the old instructions standing right next to it.

Here’s the part that matters if you have this condition, or love someone who does.

Getting counted and getting helped are not the same achievement. This code is the first one. It means, starting in April 2027, doctors have a name to write down that isn’t just “eczema, unresponsive.” It means researchers can finally find you in the data, all of you, as a group, for the first time. That’s real. People fought for three years to get that far, and before that, patients spent a decade making the case with nothing but their own testimony.

But the code doesn’t come with a treatment. It doesn’t come with a trial. It doesn’t come with a drug built for what you actually have, instead of the drug that happened to be sitting on the shelf next to it. The paragraph proving you’re not imagining this and the paragraph telling your doctor what to do about it were written by two different moments in time, and only one of them has caught up.

None of this happens quickly, either. The code takes effect in April 2027 — over a year from now. Even once it does, a code doesn’t create a treatment. It creates the possibility of proving one works, someday, if someone runs the trials, and if anyone has a reason to pay for them. The drug that would target the actual mechanism found in that lab isn’t patentable. The lab that found it has, by its own account, slowed down. So the honest timeline isn’t “help is coming.” It’s “The argument that TSW belongs within the medical system has finally been won, and the argument about how to deliver it hasn’t started.”

That gap isn’t a betrayal. Nobody sat down and decided to leave it there. It’s just what happens when an argument moves faster than the evidence needed to finish it. Which means the work isn’t over because the code exists. In some ways, it just started.

If you’re living with this now, the code changes what your chart says before it changes what happens to your skin.

The next challenge may not be creating a code, but ensuring clinicians recognize when to use it

Sources

Primary documents (US federal government records, public domain)

  • ICD-10-CM Coordination and Maintenance Committee Meeting packet, March 20, 2024 — Topical Steroid Withdrawal proposal, pp. 100–101
  • ICD-10-CM Coordination and Maintenance Committee Meeting packet, September 10–11, 2024 — Topical Steroid Withdrawal proposal, pp. 123–125
  • ICD-10-CM Coordination and Maintenance Committee Meeting packet, September 9–10, 2025 — Topical Steroid Withdrawal proposal, pp. 158–159

The mechanism paper cited in the September 2025 proposal

  • Shobnam N, Ratley G, Saksena S, et al. (Myles IA, senior author). “Topical Steroid Withdrawal Is a Targetable Excess of Mitochondrial NAD+.” Journal of Investigative Dermatology, vol. 145, no. 8 (2025): 1953–1968. doi:10.1016/j.jid.2024.11.026

On the committee vote and code approval

  • “Potential Treatments for TSW Identified in NIH Study,” Dermatology Times, June 13, 2026 — Kelly Barta interview on the review process and vote
  • Allergy & Asthma Network, press release on ICD-10-CM code approval, June 25, 2026

On the pilot study of metformin and berberine

  • Shobnam et al., J Invest Dermatol 2025 (as above) — open-label case series results
  • “Findings on Topical Steroid Withdrawal Versus Eczema, with Ian Myles, MD, MPH,” HCPLive
  • NIH/NIAID press release via EurekAlert!, March 14, 2025
  • Myles IA. “Topical steroid withdrawal: dissecting the controversy.” Frontiers in Medicine, vol. 13 (2026). doi:10.3389/fmed.2026.1786331

On the research stalling

  • “NIH study was a beacon for the topical steroid withdrawal community. Then, amid federal upheaval, the research stalled.” STAT News, December 22, 2025

Note on verification

  • The final approved code is confirmed as L30.81 (”Chronic dermatitis following topical steroid use”), effective April 1, 2027, with “Topical steroid withdrawal,” “Topical steroid withdrawal syndrome,” and “Red skin syndrome” listed as official inclusion terms — matching the original proposal number. This was confirmed via a CDC/ICD-10-CM webinar Q&A in addition to the committee packets themselves.

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