Carl Herbort and Marina Papadia from the Centre for Ophthalmic Specialised Care in Lausanne, Switzerland analysed the cases of Birdshot seen at the centre between 1995 and 2010.  These cases included people who had no specific diagnosis on referral, because they did not have the typical ‘birdshot lesions’, although they were HLA A29 positive.  These patients did have vitritis and retinal vasculitis (this is as a result of the inflammation, and to us Birdshotters presents as the floaters and ‘mist’ and other symptoms we have).

When these people were given ICG (Indocyanine Green Angiography) they were shown to have ‘bilateral evenly distributed choroidal hypofluorescent dark dots representing choroidal granulomas’.

The conclusion of this retrospective analysis is that ICG is an essential tool to diagnose early Birdshot.

This is a really interesting piece of research for me – I first presented without the typical Birdshot spots/lesions – but I was lucky to come across an amazing ophthalmologist who diagnosed me in record time (and did give me an ICG!) and got me onto appropriate medication in record time.  I still have very few of those characteristic spots/lesions, 7 years into the disease!

The full article can be accessed at:  http://www.ncbi.nlm.nih.gov/pubmed/22496001

Rea

Those of you who attended the Birdshot Day on 3 March will remember our very inspiring speaker, Professor Glen Jeffery and his research into Vitamin D.

Coincidentally, John Hall, one of our Directors, was diving in Palau last week  and found a very extensive article on Vitamin D.  (for those of you who, like me, don’t know where Palau is – I looked it up – it is an island off the Philippines).

The full article can be found at

http://www.sciencenews.org/view/feature/id/332009/title/The_power_of_D_

The article reviews all the research and all the arguments both for and against Vitamin D and looks at why it might be a useful remedy.

Please remember the warnings though – those of us who are on steroids and immunosuppressants are already putting some strain on our liver/kidneys, so please ALWAYS check with your consultant if you want to add supplements into your regime, as they can and do interact with your medication.

Researchers from the University Eye Clinic in Maastricht, The Netherlands have looked at the role of Lutein in eye health.

Lutein is one of the carotenoids – it is a yellow and orange pigment found in many fruits and vegetables such as carrots, mangoes, corn, sweet potatoes, tomatoes and dark leafy greens such as kale and bok choy.  Interestingly, lutein tends to make up a minor part of our diets here in the UK.

It has been suggested for some time that Lutein protects the eyes against macular degeneration and cataracts.

Lutein, together with another anti-oxidant, zeaxanthin, forms the macular pigment (and thus protects us from glare and bright lights).

The research showed that animals that did not have an intake of lutein displayed early signs of degeneration of the retina.

Of equal interest to us Birdshotters is the recent findings that lutein can affect immune responses and reduce inflammation.

We are not suggesting that every Birdshotter rushes out to buy lutein – remember that every supplement can affect our body negatively as well as positively, and can inter-act with our medication regimes – so it is always best to check with your consultant.  However, this piece of research looks very promising, and is a really good reminder that we need a balanced, healthy diet.

The full article can be found at:  http://www.ncbi.nlm.nih.gov/pubmed/22465791

Scientists from Charite – Universitatsmedizin Berlin and the Institute for Research in Biomedicine in Switzerland have looked at the micro organisms we all carry around and found that, whilst some microorganisms can activate immune cells (leading to certain auto-immune diseases), other microorganisms can help develop an anti-inflammatory response.

They found that one of our body’s own immune system hormones called interleukin 1b works like a ‘switch’ – if it is present, it trains immune cells to become destructive (a dis-regulated immune system) whereas, if it is absent the immune cell develops into an anti-inflammatory counterpart.  It is the microorganism balance we carry in our bodies that determines whether interleukin 1b is produced or not.

This is really interesting – to my mind, it begins to explain why pro biotics have become so popular, and why something like food poisoning (which changes the balance of your micro organisms) might be a ‘trigger’ for autoimmune diseases.

The full article can be found in ScienceDaily at:  http://www.sciencedaily.com/releases/2012/04/120405075223.htm

With more Birdshotters registering on BUS, we are beginning to develop a better picture of Birdshot.  One of the interesting questions that keeps arising is whether certain geographical areas have more people with Birdshot.

At our Birdshot Day on 3 March, we were quite amazed to find two people with Birdshot from a very small town.  They were equally amazed!  We have also noticed that there are several members who live within a few miles of each other in an urban area and another ‘cluster’ in a northern city – again quite disproportionate to the probable total numbers of people with Birdshot in the UK.

We would really like to build up a more accurate picture of the geographical spread and we can only do this with your help.

We would love to have your postcode (if you have not already supplied us with it) so we can map where you live, and produce a more accurate map of the geographical location of us Birdshotters.  Your postcode will be kept totally confidential – it will only be used to help us identify your geographical location on a map.  Once we have mapped the UK, we will attempt to map other countries too, and begin to build up an international picture.

Please send your postcode to us at info@birdshot.org.uk

We thought you would be interested in seeing the google analytics map of the UK of visitors to the BUS website since September 2010. Of course, not all visits are from Birdshotters, but it certainly identifies areas where the strongest interest is.

Thank you in advance to everybody who sends us their postcode, so we can produce a realistic map of the UK to show geographical locations of people with Birdshot.  This will help to make sure research and services are targeted to meet our needs.

Sirolimus has been given orphan drug status, which suggests that the studies carried out at various institutions have shown positive results. It is still being trialled as  part of a phase 3 study (see attached link.)

This drug given as an invitreal injection, was discussed at the Birdshot Day 2012. We were told that the risk of developing glaucoma and cataracts as an adverse effect of sirolimus may be lower than the risk associated with steroid treatment.

We await more information, but it is possible sirolimus might be a useful alternative treatment for people with Birdshot, especially for those who fail to achieve remission on the Cellcept (mycophenolate mofetil)/ cyclosporin formula.

Recent research into Vitamin D  reported in Food Consumer, the Daily Mail, and the Daily Express, amongst many, shows a potentially interesting relationship between Vitamin D levels  and eye health.  The research funded by the Biotechnology and Biological Sciences Research Council (BBSRC) have found that vitamin D reduces the effects of ageing in mouse eyes and improves the vision of older mice significantly.

The research was carried out by a team from the Institute of Ophthalmology at University College London and is published in the current issue of the journal Neurobiology of Ageing.

Professor Glen Jeffery, who led the work, explains “In the back of the eyes of mammals, like mice and humans, is a layer of tissue called the retina. Cells in the retina detect light as it comes into the eyes and then send messages to the brain, which is how we see. This is a demanding job, and the retina actually requires proportionally more energy than any other tissue in the body, so it has to have a good supply of blood. However, with ageing the high energy demand produces debris and there is progressive inflammation even in normal animals. In humans this can result in a decline of up to 30% in the numbers of light receptive cells in the eye by the time we are 70 and so lead to poorer vision.”

The researchers found that when old mice were given vitamin D for just six weeks, inflammation was reduced, the debris partially removed, and tests showed that their vision was improved.

Professor Jeffery said “Researchers need to run full clinical trials in humans before we can say confidently that older people should start taking vitamin D supplements, but there is growing evidence that many of us in the Western world are deficient in vitamin D and this could be having significant health implications.”

Birdshot Uveitis Society is very interested to find out more about this piece of research, particularly as one or two of our members have told us that they believe that vitamin D may have helped their eye problems.    We are contacting the researchers to  find out more about this.

Four important points to note:

• At this stage there is only scientific evidence that the eye sight of the mouse improves.  There have yet to be trials on humans.
• Too much Vitamin D can be harmful, so it needs to be monitored.
• We would never advocate that members add in extra supplements without first discussing  with the specialists who treat them.
• Seemingly harmless supplements can put extra strain on your liver and kidneys or interact with your other medications

BUS did not think that the results of this study were really that surprising, given the fact that immuno-suppressants suppress the immune system it is likely that you may suffer from infections of various sorts, whether it is cystitis, sinusitis, colds or flu or something more serious like cytomegalovirus colitis and viremia.

The following paper entitled “Cytomegalovirus colitis and viremia from mycophenolate mofetil monotherapy in birdshot chorioretinopathy” was published in Ocul. Immunol. Inflamm. 2011 Dec; vol. 19(6) pp. 450-2.

Author: Pantanelli SM, Khalifa YM

The paper describes a case of cytomegalovirus (CMV) viremia and colitis in a patient on mycophenolate mofetil (MMF) monotherapy for birdshot chorioretinopathy. It showed that treatment with MMF 1.5 g twice daily for 5 years led to leucopenia and a CD4 count of 299, which resulted in active CMV infection.

The papers conclusion was that treatment with MMF alone may put otherwise immune-competent individuals at risk for opportunistic CMV infection. It is hope that awareness of this possible association may allow for better monitoring, earlier detection, and treatment in future cases.

PMID: 22106917

URL – http://www.ncbi.nlm.nih.gov/pubmed/22106917?dopt=Citation