Why the Diary Is the Protocol
Of everything asked of you in an EPOH course — the formulations, the schedule, the dietary work — the thing most likely to change the outcome is a piece of paper.
Not because writing things down is therapeutic. Because in a fluctuating, relapsing disease, memory is worthless as evidence, and at week twelve somebody has to decide whether this is working. If the only evidence is what you can recall on the day you are asked, the decision will be made on the basis of whichever week was worst, and it will be made badly.
The diary is also what protects you from us. If a review call tells you things are improving and your own record says they are not, the record is right.
This page is what to write down.
The Rules Before the Metrics
Daily. Not when you remember. Not when something happens. A record kept only on bad days is a record of bad days, and it will show you a disease that never improves.
Same time each day. Morning, before you have spent an hour looking at yourself.
Numbers, not adjectives. "Bad night" tells you nothing in eight weeks' time. "Itch 7, three new blisters" tells you everything.
Keep it when nothing is happening. Especially then. The first four to eight weeks of EPOH are internal work and no visible surface change is expected — that empty stretch is precisely the stretch the whole judgement will turn on.
The Core Four
1. New blisters today: a count
New. Not total. This is the most important number in the diary and the one most often recorded wrongly.
Counting the total number of lesions on your skin tells you very little, because total burden is a stock. It falls slowly even after the disease has begun to quieten, since existing lesions heal at their own pace regardless. New blister formation is a flow, and the flow is what tells you what the disease is doing today.
People routinely conclude that nothing is working because they see the same eight lesions at week ten as at week eight, when what is actually happening is that those are eight old lesions healing rather than eight new ones arriving. Only the new count separates those two worlds, and they are entirely different worlds.
If you have pemphigus rather than pemphigoid, the blisters are flaccid and rupture almost immediately, so you may rarely see an intact one. Count new erosions instead: raw areas that were not there yesterday.
2. Itch: zero to ten
One number, once a day, for the worst the itch reached in the last twenty-four hours.
For pemphigoid this is arguably the most sensitive instrument you have. The itch of pemphigoid frequently precedes blistering by months at the onset of the disease — it is why so many people are treated for eczema or scabies before anyone reaches a biopsy — and it tends to move before the blisters do on the way back down as well.
If the itch score is falling while your blister count is unchanged, something is happening.
Score honestly. Ten is the worst itch you have personally experienced, not a theoretical maximum you are saving room for.
3. Erosion healing time
Pick one erosion. Mark the date it opened. Record the date it closed.
That single number — days to closure — is one of the earliest and least deceptive signs of change, because it does not depend on how much disease you have. A disease that is quietening heals what it has already made faster, and it usually does that before it stops making new ones.
Do it for one lesion at a time and keep the running list. Four entries reading eighteen days, sixteen days, fifteen days, eleven days is a real finding, and it is a finding you cannot see any other way.
4. Mucosal function
If you have pemphigus — particularly pemphigus vulgaris, driven by antibodies against desmoglein 3, which usually begins in the mouth — this is not optional, and it may be the most important line on the page.
Record daily: can you eat solid food, soft food, or only liquids? Can you brush your teeth? Is swallowing painful? Is there a new erosion anywhere in the mouth, nose, throat, eyes, or genitals?
A decline here is not a diary entry to review later. It is a reason to contact your dermatologist.
Photographs
Weekly, not daily. Daily photographs will drive you mad and tell you nothing.
The rules are dull, and they matter, because the difference between two photographs taken in different light is larger than the difference between a good week and a bad one.
Same room. Same time of day. Same light — daylight if possible, and never a mixture of daylight and a lamp. Same distance. The same body sites, in the same order, every week. Put something of known size in the frame: a ruler if you have one, a coin if you do not.
Photograph the sites that are quiet as well as the sites that are worst. Do not curate. The temptation to photograph the good arm is enormous, and giving in to it destroys the value of the entire record.
The Medication Line
Write down, every day, the actual dose of everything you took. Prednisolone in milligrams. Every immunosuppressant. Every EPOH formulation, oral and topical.
Two reasons.
A taper — which is your dermatologist's decision, and only theirs — is far easier for them to make well against a dose record that shows what your disease did at each step down.
And if something goes wrong, the question "what changed, and when" has to have an answer. A diary is the only place that answer will exist.
Never adjust a dose to see what happens. Sudden steroid reduction risks adrenal insufficiency and a rebound flare, and in pemphigus a rebound flare can be dangerous. The diary is for recording, not experimenting.
The Red Line
There is a section of the diary that is not about trends. It is about today.
Contact your dermatologist or emergency care the same day if you record any of the following:
- Blistering spreading rapidly across new areas.
- An infected erosion: spreading redness, pus, foul odour, fever, or pain out of proportion to the wound. Open erosions are a breach in the body's largest barrier, in a person who is very often immunosuppressed.
- New mouth or throat erosions, or an inability to eat or drink.
- Any eye symptom at all: grittiness, redness, a foreign-body sensation, an inturned lash. Mucous membrane pemphigoid can scar the conjunctiva, and conjunctival scarring threatens sight. That is an ophthalmology emergency today.
These are not entries to raise at your next review. They are the reason your dermatologist exists.
What the Diary Is Actually For
At week six, it answers a narrow question: is anything moving? Not "am I better" — nobody is asking you to be better at week six. The question is whether any leading indicator has shifted at all: itch, new-lesion rate, healing time.
At week twelve, it answers a harder one: continue, modify, or stop.
At month four, it tells you whether surface disease has genuinely changed, which is where it should have if you are responding.
And from month eight, when sustained remission is assessed, it is the record that says whether the quiet is real or merely the quiet phase of a relapsing disease.
Without it, all four of those decisions get made on a feeling. With it, they get made on a number.
That is the entire argument for the diary, and it is enough.
