How We Measure Progress in Pemphigus and Pemphigoid

What progress looks like, and when

Pemphigus and pemphigoid are treated on a timeline, and knowing that timeline in advance is most of what makes the first few months bearable.

Weeks one to eight are internal work, and your skin is not expected to change. This is the part people find hardest, because nothing visible is happening. It is also the part everything afterwards depends on.

Months two to four are where the disease should begin to change in those who respond — fewer new blisters, erosions closing faster, less pain.

Sustained remission is assessed from month eight, not before. A relapsing disease goes quiet on its own often enough that three quiet weeks tell you very little. Eight months of documented low activity is a different thing entirely.

The four things we count

Most of these you can track yourself between appointments.

New blisters, per week. Not total lesions — new ones. The total lags behind and is demoralising to watch; the new-lesion count is the first thing to move, in either direction.

How long an erosion takes to close. Photograph the same lesion weekly, in the same light, from the same distance, with something in frame for scale. The useful photographs are always the boring ones.

The steroid dose your dermatologist is able to taper to, in milligrams, with dates. We do not taper it, suggest a taper, or comment on their schedule — we record what happens. A falling steroid dose, set by your dermatologist, with the disease staying quiet, is the most meaningful thing that can happen in this condition.

Mucosal healing. How many oral erosions, whether you can eat solid food, and your weight. Mouth involvement is often what makes daily life hardest, and it is the thing most often left out of the record.

The dates we judge them on

These are set at the start, rather than decided later by how things feel on the day.

Week six — a movement check. Have the internal markers shifted at all?

Week twelve — continue, modify, or stop. If the picture has not changed, the driver profile is re-examined. A phase is not extended in hope.

Month four — surface disease should have changed in those who are going to respond.

Stopping is a permitted outcome at every one of those points. If this is not doing anything for you, we would rather say so on a date agreed in advance than let another six months go by.

Why we track markers rather than one figure

You may have come looking for a percentage — a share of patients who improved, something to weigh against the cost. We do not have one, and the reasons are worth knowing, because they say something about the disease itself.

Almost everyone treated here is also under a dermatologist, on a steroid, often a steroid-sparing agent, sometimes rituximab. That is the correct clinical situation and we insist on it. It also means that when someone improves, two things were happening at once, and the share belonging to each cannot be cleanly separated.

The disease fluctuates by itself. Bullous pemphigoid in particular can quieten substantially over time. Improvement during treatment is not automatically improvement because of it.

People who stop early are the hardest to follow up, and they do not stop at random. A figure drawn only from those who stayed would describe a different group from the one you belong to today.

A single number would hide all three. The markers above do not — they tell you what should change for you, and by when, which is the question that actually matters when you are the patient.

What we do not claim

There is no cure for pemphigus or pemphigoid. We do not have one. What we work towards is sustained remission: a quieter disease, under less pressure, that can still relapse.

Our case records are records of individual people. They are drawn from the notes, and where the notes do not say something, we leave the gap rather than fill it. A case record can tell you that something happened to someone; it cannot tell you how often.

We will never ask you to reduce or stop anything your dermatologist has prescribed. That decision is theirs, always, and we will not ask you to delay a hospital visit, an ophthalmology referral or a biopsy either.

Questions worth asking any clinic

If you are weighing up a treatment for blistering disease — this one included — these four questions are worth putting to whoever is offering it.

• Compared to what? Was there a comparison group, or only the passage of time?
• Who else was treating the patient over the same period?
• Who is counted — everyone who started, or only those who finished?
• When was success defined: before the results were in, or afterwards?

Where this starts for you

Before anything else you need your own baseline: new blisters per week, how long erosions take to close, your current steroid dose with dates, and whether you can eat comfortably. Written down, those four lines are worth more to a consultation than any figure on any clinic’s website.

Bring them to a video or WhatsApp consultation with the clinical team and there is something concrete to measure against from day one.