Experiences with
Pemphigus vulgaris

Check if you have pemphigus vulgaris

Pemphigus vulgaris causes blisters that burst easily and leave very sore patches.

The most common area affected is inside the mouth and throat, which can make swallowing painful.

Many people also get blisters on their skin. These usually appear a few months after the mouth is affected.

The blisters and sore areas can cover a large area of the body. Sometimes they can also affect the eyes, genitals or anus.

you have blisters or sore patches in your mouth or on your skin that do not go away or keep coming back

Treatments for pemphigus vulgaris

If a GP thinks you could have pemphigus vulgaris, they can refer you to a skin specialist (dermatologist) for tests and treatment.

Blisters caused by pemphigus vulgaris usually come and go over time. There's no cure, but treatment can help.

The main treatments are:

steroid tablets
other medicines such as azathioprine, methotrexate and rituximab

It usually takes a few weeks for the blisters to heal. Once this happens, you'll probably need treatment for several years to help stop the blisters coming back.

It may be possible to stop treatment eventually. If the blisters come back, you may need to repeat treatment.

Things you can do if you have pemphigus vulgaris

If you have pemphigus vulgaris, there are some things you can do to help ease the symptoms and reduce the risk of further problems.

clean your teeth using a soft toothbrush and mint-free toothpaste
use antiseptic or painkilling (anaesthetic) mouthwash (try to avoid mouthwashes that contain alcohol)
keep any sore patches clean to reduce the risk of infection
have regular dental check-ups

do not eat spicy, acidic or hard foods if you have blisters in your mouth
do not do activities that could damage your skin (such as contact sports) if you have blisters on your skin

Complications of pemphigus vulgaris

Pemphigus vulgaris can lead to other problems, such as:

blisters and sore patches becoming infected, which can cause life-threatening problems such as sepsis
weight loss and malnutrition because of pain when eating and drinking
tooth decay and gum disease because it can be painful to look after your teeth and gums
pain during sex and pain when peeing or pooing (if your genitals or anus are affected)

You'll have regular check-ups to look for these problems and may be referred to other specialists (such as a dietitian) if needed.

your blisters or sore patches are very painful or feel hot
there is yellow or green pus coming from your blisters or sore patches

These are signs of an infection, which needs to be treated quickly.

You can call 111 or get help from 111 online .

Causes of pemphigus vulgaris

Pemphigus vulgaris is caused by a problem with the immune system, which is the body’s defence against infection.

Instead of attacking germs, something goes wrong with the immune system and it attacks the skin by mistake. This damages the skin and causes blisters to appear.

It’s not clear why this happens. It’s not passed on in families and it’s not caused by an infection, so it cannot spread to other people.

Support if you have pemphigus vulgaris

Living with pemphigus vulgaris can be very difficult.

As well as support from your care team, it may help to get information and support from groups and charities such as:

Pemphigus Vulgaris Network – a UK support group for people with pemphigus vulgaris
PEM Friends – a UK support group for people with pemphigus vulgaris and related conditions
International Pemphigus and Pemphigoid Foundation – a global support group for people with pemphigus vulgaris and related conditions

SymptomsCausesMedical treatmentsComplicationsSelf-care

The main symptom of pemphigus vulgaris is blisters in the mouth and on the skin that burst easily and leave sore patches.

Pemphigus vulgaris is caused by the immune system attacking and damaging the skin. It’s not clear exactly why this happens.

There’s no cure for pemphigus vulgaris, but long-term treatment with steroids and other medicines can usually help control the symptoms.

Pemphigus vulgaris can lead to serious problems, including life-threatening infections, pain and problems with the teeth and gums.

If you have blisters from pemphigus vulgaris, things that can help include brushing your teeth with a soft toothbrush and mint-free toothpaste.