We publish no success rate
Not because the numbers are bad. Because any number we published here would be unverifiable, unaudited, and chosen by us. You would have no way to check it. A claim you cannot check is worth nothing — it is marketing in a lab coat, and every clinic quoting a success rate for pemphigus is quoting itself.
What we can do instead is tell you exactly what we count, when we look at it, and what result would mean we are not helping you. A claim that cannot fail is not a claim at all.
What we measure
1. New blister count, per week. The single most important number. Not total lesions — new ones. The total lags and demoralises; the new-lesion count is the first thing to move, in either direction.
2. Time to re-epithelialise. How many days a given erosion takes to close. Photograph the same lesion, in the same light, weekly.
3. The steroid dose your dermatologist is able to taper to. In milligrams, with dates. We do not taper it. We do not suggest a taper. We do not comment on their schedule. We record what happens. A falling steroid dose, set by your dermatologist, with the disease staying quiet — that is the most meaningful outcome available in this disease, and it is theirs to deliver, not ours to claim.
4. Mucosal healing. Number of oral erosions. Whether you can eat solid food. Whether swallowing hurts. And your weight, weekly — weight is the honest witness that everything else lies about.
5. Itch — out of ten, daily — and nights woken. In pemphigoid this frequently moves before anything is visible on the skin.
6. Antibody titre — anti-desmoglein 1 and 3, anti-BP180 — whenever your dermatologist repeats the ELISA. We make no claim that our formulations lower it. We record it because it is the most objective number in your file, and because it is the number that would embarrass us if it kept climbing while we told you things were going well. We would rather be embarrassed than trusted for the wrong reasons.
7. Infection episodes, hospital admissions, and adverse effects. Recorded, not buried.
When we judge it
Weeks one to eight. Internal work. Visible surface change is not expected, and judging the protocol here is meaningless in both directions — neither improvement nor disappointment means very much yet.
Months two to four. The first honest checkpoint. Something on the list above should be moving: fewer new blisters, erosions closing faster, itch down, the mouth more usable. If nothing has moved by the end of month four, that is a real signal — and the honest reading is that this is not working for you. We will say so.
Month eight onward. Whether remission is holding, and — the real question — whether it holds while your dermatologist reduces the medication. We call that sustained remission. We do not call it anything grander, and we do not promise a cure.
Who this does not help
Read this section twice. It is the most useful part of the page.
- Anyone with inherited epidermolysis bullosa. It is a genetic mutation in the proteins that hold skin together. It is not autoimmune, and it is not reversible by any treatment, ever — not ours, not anyone's. Only EB acquisita, the autoimmune form, belongs in this hub at all. If someone has told your family otherwise, they were taking your money.
- Anyone with active ocular mucous membrane pemphigoid who wants an alternative to specialist care. You need an ophthalmologist now. Sight lost to conjunctival scarring does not come back.
- Anyone acutely unwell — widespread raw skin, fever, unable to drink, hoarse or breathless. That is a hospital, today.
- Anyone whose plan is to come off their conventional treatment. We will decline the case — not as a formality, but actually.
- Anyone who needs this to work quickly. Nothing here is quick. A protocol that has not been given eight months has not been given a fair test, and if you cannot commit to that, do not start.
- Anyone unwilling to change sleep, food, glycaemic control and alcohol. Formulations are one half of Phase L. You are the other half, and it does not work with one half.
- Anyone who wants an assurance of the outcome. Nobody can honestly give you one in this disease.
What success would look like — stated so you can hold us to it
Fewer new blisters each week. Erosions closing faster than they did. Itch down and sleep back. A mouth you can eat with. Weight stable. And above all: your dermatologist able to reduce your medication without the disease coming back up.
If those things are not happening between months four and eight, the protocol is not working for you. The right response then is to stop and say so — not to buy another eight months. We would rather you left than stayed on something that was not helping, and if that costs us a customer, it is the right trade.
Everything we do is formulation-based: oral compounds and topicals, couriered, taken at home. There is no procedure, no in-clinic therapy, and no clinic visit at any stage. It is supportive care alongside your dermatologist, and it is never a reason to change a dose they have set.
