The Number You Came Looking For
Somewhere on this site you expect to find a figure. A proportion of patients who improved. A share who reached remission. Something to weigh against the risk and the cost.
There is no such figure here, and there is not going to be one.
This page is why. It is the least flattering page on the site and probably the most useful, because once you understand why our number would be meaningless, you will also understand why theirs is.
Reason One: We Have No Control Arm
Pemphigus and pemphigoid fluctuate. They flare, and they settle. Bullous pemphigoid in particular can quieten substantially over time, and some people improve for reasons nobody can identify.
Which means that if a patient improves while taking our formulations, we cannot tell you that the improvement came from the formulations. To claim that honestly, we would need to know what would have happened to that same person, over that same period, without them.
We do not know, because we have no comparison group. We are a clinic, not a trial.
Any clinic reporting an improvement figure and attributing it to their own treatment is quietly asserting that they know what would have happened otherwise. They do not. Neither do we. The difference is that we are telling you.
Reason Two: We Cannot Separate Our Effect From Your Dermatologist's
This is the one that ends the argument, and it is not subtle.
Every patient on EPOH for blistering disease should also be on conventional treatment — a steroid, often a steroid-sparing agent, sometimes rituximab. That is not an inconvenience to our data. It is the correct clinical situation, it is what we insist on, and we would decline to run the protocol otherwise.
But it means that when someone improves, there are two things in the room. And the one with decades of evidence behind it, the one that transformed the outlook of pemphigus from a frequently fatal disease into a treatable one, is not ours.
For us to publish a success rate would be to take credit for outcomes produced by an intervention we did not administer, in patients whose care we do not lead. It would be arithmetically simple and intellectually dishonest, and the fact that it is standard practice in this sector does not make it any less so.
Reason Three: The Denominator Is the Part Nobody Shows You
Suppose we wanted to compute a rate anyway. Who goes in the denominator?
Everyone who enquired? Everyone who started? Everyone who completed?
Almost every figure published in this industry is quietly computed on completers, and completer figures are close to meaningless, because the people who leave are not a random sample. They are disproportionately the people it was not working for.
We know exactly where our leavers go. There is a window — weeks three to six — in which the protocol has produced no visible change, because the first four to eight weeks are internal work and none is expected. People quit in that window. Some quit because they were never going to respond and the protocol was already failing them. Some quit because they lost faith while it was quietly working. We cannot always tell which.
Those are precisely the people a real denominator must include.
Any rate we published would exclude them. It would therefore be computed on the survivors of our own attrition, and it would flatter us by exactly the amount we understand least.
Reason Four: Nobody Agrees What Success Means
Define it. Go on.
No new blisters — over what period? A fortnight is nothing in a relapsing disease. A lower steroid dose — a decision made by a dermatologist, for reasons that include but are hardly limited to us. Less itch? Faster erosion healing? Fewer hospital admissions? A patient who says they feel better?
Each of those definitions yields a different number, and every one of them could be reported as the success rate without technically lying.
Which is exactly how the numbers you have already seen were produced. The definition is chosen after the data are in, and it is chosen to be the one that reads best.
Reason Five: We Are Not a Disinterested Party
The uncomfortable one.
We are paid for the formulations. If you continue, we are paid more. We therefore have a direct financial interest in your believing this is working, and in your continuing to take it — including through the months where nothing is visible and you are inclined to stop.
That is a real conflict, and it does not disappear because we are pleasant about it.
It is why the decision gates are written down in advance rather than assessed by feel: week six is a movement check, week twelve is continue-modify-or-stop, month four is where surface disease should have changed, and a stop at any of those is a permitted outcome. It is why we publish, in detail, who this does not work for. And it is a large part of why we will not publish a headline figure.
A headline figure produced by an interested party, from uncontrolled data, on a self-selected denominator, with a definition of success chosen afterwards, is not evidence. It is marketing in a lab coat.
What We Will Tell You Instead
What the protocol is. Oral formulations and home-applied topicals, couriered, taken at home. No procedure, no in-clinic therapy, no clinic visit at any stage.
What we expect, and when. Four to eight weeks of internal work with no visible surface change. Disease beginning to change, in those who respond, across months two to four. Sustained remission assessed from month eight — never earlier, and distrust anyone who says otherwise.
Who it does not suit. Published in detail, including the people we turn away at the door.
When we will tell you to stop. Published, with dates attached.
Individual case records, with their limits stated. We have them. They are records of individual people, drawn from the notes, and where the notes do not state something, we do not fill the gap with something plausible. They are not evidence of a rate and we will not present them as one. A case report can tell you that a thing happened to someone. It cannot tell you how often — and anyone stacking four of them to imply a proportion is performing a conjuring trick.
And that we do not promise a cure. There is no cure for pemphigus or pemphigoid. We do not have one and we are not claiming one. What we work toward is sustained remission: a quieter disease, under less pressure, that can still relapse.
What to Do With Any Number You Are Shown
Ask four questions — of us, or of anyone.
Compared to what? Was there a control group, or only the passage of time?
Who else was treating the patient? Is the effect being claimed actually the dermatologist's?
Who is in the denominator? Completers, or everyone who started?
Who chose the definition of success, and when? Before the data, or after?
Most numbers in this field do not survive the first question. Ours would not survive it either.
That is why there is not one.
