News letters

 

PEM FRIENDS UPDATE

MARCH 2017

Hello everyone,

I hope you are all well and keeping your blisters well under control. It’s always good to hear from you, so please let me have your feedback, comments, updates, etc.

I am sorry that it has been such a long time since my last update. These seem to have become an annual event, as the last one was a year ago and the one before was a year before that! I have been working away for 9 months and time has been at a premium. I have also broken my shoulder which makes typing a very slow process. But I had a few things that I wanted to let you know about.

The Facebook group goes from strength to strength and now has over 100 members. You may already be a member of this group and will, no doubt, testify to its value. Not everyone contributes actively, but it provides an immediate source of advice and support for anyone who wants it. If you aren’t a member of the group, do have a look and think about signing up, even if you just observe and don’t comment. It isn’t difficult, I promise.

 

MESSAGE FROM OUR PATRON AND FOUNDER, CAROLYN BLAIN

Hello PEM Friends

Whilst I realise all of you will be very concerned about your individual health issues, do please spare a thought too for Isobel Davies, the Administrator of PEM friends. Isobel not only runs her own business but also has MMP.  She is an example of how we can all get on with our lives whilst still coping with the various autoimmune diseases we have to tolerate.

Please do give Isobel feedback, and if you have comments about your treatment which you feel might be of interest or benefit to others, do send them to Isobel for inclusion in the next newsletter.   They could be included anonymously or with your name – whichever you’d prefer.

I’m happy and grateful to say that I’ve been in total remission (i.e. no meds) since the beginning of 2008.   Remember, there is light at the end of the tunnel although I think much depends on how quickly the disease is diagnosed.

Have to say in my case diagnosis was very quick and that was only because I pushed and pushed for an answer to my symptoms.  I wouldn’t accept what was said by the first GP I saw, who just told me there wasn’t anything wrong and implied that I was ‘just fussing’.

Went back a couple of days later and saw a locum GP in the same practice.   How fortunate as he was a retired Indian doctor who was obviously familiar with PV.  [It isn’t so rare in India where I think he must have had some experience of PV etc.]  He got the ball rolling.

Don’t be afraid to challenge what your derm or GP says to you.  This can be done very politely and I would imagine they’d appreciate having a patient who wanted to know more about their condition.

Do try to remain as active as possible.  You could enquire about local organisations that provide activities or walking groups who maybe just meet for 30 – 60 minutes weekly.   It would be so good for you and enable you to meet new people.

I’m very involved with my local authority and know they provide many opportunities.  I would imagine other local bodies have similar initiatives.

You know the old adage:   healthy mind – healthy body!   I’m convinced that if you no longer go out to work it can only be beneficial to get up, get out and get involved.

 

All best wishes for improvement to your health.

Carolyn

 

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

PEM FRIENDS ACCOUNTS

As ever, Kal has done a sterling job keeping us solvent. He manages our funds while doing a very busy Finance role in the City of London.

We currently have a balance of £73.73 in the account, with thanks to those of you who have donated. Most money goes towards paying for some of the costs of running the website, although there were insufficient funds to pay for the renewal this year, so a significant proportion came from me. If we don’t have enough next year, I might have to let the website lapse. However, if we can get a reasonable level of funds, it will go towards additional means of extending our membership and establishing us as a more influential force with the medical profession. The greater our number, the more influence we can bring to bear.

If you would like to contribute, donations can be made to:

HSBC
A/C: 51504525
S/C: 40-08-33
Account name:  PEM FRIENDS

MEETINGS

If anyone is interested in organising a get together, then let me know. I am happy to help, but won’t be able to do anything myself for a while. The PEM Friends Facebook Group are hoping to have a meeting in Brent Cross, London in May. If you are interested in attending, but are not on Facebook, then let me know and I will pass it on.