Support for patients with Pemphigus and Pemphigoid and their carers
STUDIES, PAPERS AND VIDEO CLIPS
Although Pemphigoid and Pemphigus are regarded as rare diseases, there are many papers and articles on the subject, and more videos on YouTube than you can shake a stick at. Below are just a very small sample of links to articles which may be of interest.
MMP
“The first international consensus on mucous membrane pemphigoid: definition, diagnostic criteria, pathogenic factors, medical treatment, and prognostic indicators” was written following a meeting of the world’s eminent Dermatologists with specialist knowledge of Pemphigoid.
A follow up on this paper is a paper on definitions and outcome measures.
Definitions and outcome measures for mucous membrane pemphigoid
BULLOUS PEMPHIGOID
Doxycycline vs prednisolone: Article in the Lancet
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Doxycycline versus prednisolone as an initial treatment strategy for bullous pemphigoid
APPF
The French organisation has been very active in their involvement in research and in developing guidelines.
Their leaflet on wound care is an example. Read Here
The video on aspiration of blisters is also noted in the section on Tips and Suggestions.
Video on aspiration of blisters
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CURRENT RESEARCH
There are several ongoing and previous studies by the Centre for Evidence based Dermatology.
Current work includes:-
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And a validation study of bullous pemphigoid and pemphigus vulgaris data recorded in routinely collected electronic healthcare records in England. This will enable researchers to analyse and check suppositions about Bullous Pemphigoid in particular. Data on other bullous diseases has proved to be less reliable.
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Rituximab
There are many papers on the use of Rituximab for bullous disease. This is one example
Rituximab: A Magic Bullet for Pemphigus
However, Rituximab has been a difficult treatment to obtain in the UK, despite its relatively successful adoption as a standard treatment for moderate to severe cases in the USA. Trials in Europe have resulted in it being a more common treatment there. In the UK, however, despite having approvals since 2016, it is still not widely used. This is the latest:
Clinical Commissioning Policy: Rituximab
for immunobullous disease
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GRIDD
GRIDD is a programme led by Professor Edna Christine Bundy at Cardiff University and funded by the International Alliance of Dermatology Patient Organisations (also known as GlobalSkin). This research investigates the burden of skin disease from a patient perspective
EUROPEAN REFERENCE NETWORK AND E-PAGS
There are many European Commission funded ERN’s, intended to foster cross-border medical cooperation and the pooling of knowledge. ERN Skin is one of these groups and autoimmune bullous disease is an area focus. ERN
Translation- ERN SKIN - Drugs used in Autoimmune bullous disease
European Patient Advisory Groups (ePAG) ensure that the patient voice is incorporated in the development of ERNs. Several organisations participate and the French APPF, in particular, ensures input on autoimmune Bullous disease.
