MEDICAL DEVELOPMENTS

One of our members, Ingrid, participated last year in a study run by the UK Dermatology Clinical Trials Network based in Nottingham. The UK DCTN was formed in 2002 with the aim of conducting high quality, independent, multi-centre clinical trials for the treatment or prevention of skin disease. It is a collaborative network of dermatologists, dermatology nurses, health services researchers and patients throughout the UK and Ireland, and we are keen to maintain our involvement with them. Let me know if you’d like to know more or perhaps get involved.

Their recent study, to which we contributed, was a comparison between the use of Prednisolone and Doxycycline in the treatment of BULLOUS PEMPHIGOID and I attach the results below. More detail can be obtained from the report that was published in this month’s Lancet. If you would like to see a copy, I include the link, below.

Professor Dart, who has been a great friend to PEM Friends, particularly those affected by MMP also sent his article on cicatrising conjunctivitis – “The Bowman Lecture. Conjunctival curses: scarring conjunctivitis 30 years on”. It’s a little technical, but worth a read. http://PEM Friends.co.uk/resources/articles/

Professor Dart is retiring from his clinics this year, but will continue with his research work. His replacement at Moorfields is Saj Ahmed. Professor Dart assures me that he intends to remain involved in the MMP Patient Days. Details of previous events, including the video appearances of John Dart, Saj Ahmed, Jane Setterfield and yours truly can be viewed on our webpage. http://PEM Friends.co.uk/resources/media-2/

While I am discussing Professor Dart, we are thinking of nominating him for an award and I am keen to have any commentaries which we can use to show how he goes beyond the day job to provide care and treatment for his patients.

Bullous Pemphigoid Study

I have asked by one of the Doctors involved for feedback on the study, so let me know if you have comments you would like me to pass on.

Patient Newsletter from Nottingham University:-

We are working hard to ensure the results of the study are seen by both doctors and patients around the world. We have published the results of the study in The Lancet – one of the top medical journals – and also in a comprehensive NIHR report. These publications, as well as other information about the study, can be accessed via the BLISTER study website: www.blistertrial.co.uk or you can contact us for more information (see below).

You are very welcome to share the content of this newsletter with healthcare professionals as well as anyone else who you think may benefit from this information.

After 6 weeks of treatment, almost three-quarters (74%) of people in the doxycycline group had a good treatment response (3 or fewer blisters) compared with 91% in the prednisolone group.  Over a year of treatment, 4 in 10 people experienced serious side effects who started on prednisolone compared to 2 in 10 who started on doxycycline. The results were about the same for people who had mild, moderate or severe bullous pemphigoid.

What were the key findings of the study?

Although more people starting on prednisolone had a good treatment response than those on doxycycline, they also experienced significantly more severe side effects. It should be kept in mind that although fewer participants starting on doxycycline had a good treatment  response (compared to those starting on prednisone), many participants – nearly three quarters – did have a good response. Additionally, these participants did not experience as many severe, life threatening or fatal side effects. This study gives doctors and patients another option for bullous pemphigoid treatment. Doxycycline, although not quite so effective in the short term, is a significantly safer treatment in the long term. Starting treatment with doxycycline is reasonably effective in the short-term and much safer than starting treatment with oral steroids in the long-term.

What will happen with the results?

We are working hard to ensure the results of the study are seen by both doctors and patients around the world. We have published the results of the study in The Lancet – one of the top medical journals – and also in a comprehensive NIHR report. These publications, as well as other information about the study, can be accessed via the BLISTER study website: www.blistertrial.co.uk or you can contact us for more information (see below).

You are very welcome to share the content of this newsletter with healthcare professionals as well as anyone else who you think may benefit from this information

This study was only possible because so many people with bullous pemphigoid were willing to get involved. We’d therefore like to express our sincerest thanks to all the BLISTER study participants. By taking part in this research, you’ve helped give an extra treatment option to people who experience this disease in the future.

Contact Information: Post: Centre of Evidence Based Dermatology, King’s Meadow Campus, Lenton Lane, Nottingham, NG7 2NR Email: CEBD@nottingham.ac.uk Website:  www.nottingham.ac.uk/dermatology Telephone: 0115 823 1048

You can see full details of this NIHR HTA funded study in The Lancet:

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)30560-3/fulltext?elsca1=tlxpr

UK DCTN Chair Prof Hywel Williams describes the study results in this short video on the BLISTER Study website:

http://www.nottingham.ac.uk/research/groups/cebd/projects/5rareandother/blistertrial.aspx