Because pemphigus vulgaris (PV) is so rare, many GPs have not come across it before. If your GP suspects PV, you will need to be referred to a dermatologist (skin specialist).
A dermatologist will confirm the diagnosis and prescribe appropriate treatment.
PV should always be suspected in anyone who has sores inside the mouth that do not heal. The mouth is affected in many cases of PV, and sores may also be seen in other places, such as the vagina or the skin.
Confirming the diagnosis
The diagnosis of PV can be confirmed by doing a skin biopsy, in which a sample of an unbroken blister is sent to a laboratory. The sample is examined under a microscope to see whether the skin cells are breaking apart, which would indicate PV.
To confirm the diagnosis further, a technique called immunofluorescence can be used.
- In direct immunofluorescence the skin biopsy is stained with dye to detect PV antibodies in the cells.
- In indirect immunofluorescence the levels of PV antibodies in the blood are measured.
Coping with a diagnosis
Being told you have a rare chronic disease can be a bewildering, frightening and sometimes lonely experience.
You may want to find out as much as you can about PV and how best to cope with it.
A good place to start is the Pemphigus Vulgaris Network, which is a UK support group for people with PV.
There is also the International Pemphigus & Pemphigoid Foundation. While their website is primarily designed for an American audience it does provide useful advice, a number of blogs written by people affected by PV and news items about recent research into the condition.
