Useful tips

These are rare diseases and the more you understand how they work and learn to listen to your body the better. You should play an active part in managing and monitoring the disease and your treatments.

You can choose which expert you are referred to. Find someone who has experience and expertise in immunobullous diseases like pemphigoid and pemphigus and ask your GP to refer you to them. Do your research. These are rare diseases and awareness amongst the medical community is generally low. Be prepared to travel to find an expert.

PEM diseases are chronic and can last a long time. It’s easy to forget the various eruptions and flares as well as treatments and side effects. Keep a log of your symptoms, consultations and medication, as well as any possible triggers.

If you do go in the sun, wear high factor sun protection (factor 50) or cover up.

Consult your dentist and make sure they are aware of the damage that trauma from their interventions can produce, but also make sure you keep your teeth and gums clean and have regular appointments with the hygienist. Ensuring good oral hygiene is very important as gingivitis tends to worsen the underlying blistering condition.

If your blisters are very large, swollen and painful, they can be aspirated.

If you have a problem swallowing (for example) then many drugs can be administered in solution. For instance, Mycophenolate can be delivered in this form.