We have recently posted about the importance of ensuring that we get the right diagnosis, testing and monitoring for Birdshot as other diseases can often look like Birdshot, but will require totally different treatments.  A research paper from the Massachusetts Eye and Ear infirmary in Boston has recently been published, and builds on this theme.

The paper examines ways in which to test and monitor for Birdshot, and is really useful in helping us understand the monitoring tests we get, and why we get them.

In short, the paper explains that it is critical to diagnose and carefully monitor Birdshot as it can progress insidiuously without any associated pain, and looking just for visual acuity, inflammation or vascular leakage of fluorescein alone, may not be effective.

The authors of the paper review the current methods of diagnosing, testing and monitoring for Birdshot including ERGs, fluorescine angiography, indocyanine green angiography, OCTs, visual field tests and HLA A29 blood testing.

The major finding is that 70% of people with Birdshot have abnormal readings on one of the parameters (the 30 hz flicker) of ERGs.  This is really interesting, as it means that ERGs may be a fairly good way to help diagnose Birdshot.  It also could mean that if we have a ‘normal’ 30 hz flicker result, we may be able to reduce our medication.

This does not mean, of course, that we can do without some of the other monitoring – each system has its uses.  For example, OCT is particularly pertinent if you have macular oedema, and we posted recently about the importance of indocyanine green angiography.  However, it does help us, as patients with Birdshot, understand why all these tests are so very important in ensuring that we maintain our visual acuity and are not under or over medicated, and that our medication regimes are effective.

Read the full article by clicking the link below.

AUTHORS: Comander J, Loewenstein J, Sobrin L

PMID: 21958183

URL – http://www.ncbi.nlm.nih.gov/pubmed/21958183?dopt=Citation

An interesting piece of research has just been reported on.  The research, undertaken by a team, led by Dr Suzanne Hodgkinson from the University of New South Wales in Australia has found that injecting interleukin-5 into rats with Guillain-Barre syndrome (an autoimmune disease) makes them recover much more quickly, and if given as a preventative measure, ensured they did not fall ill.  It seems that this treatment may also be effective in other autoimmune conditions (Birdshot is an autoimmune disease – perhaps it will work for us?).

The exciting thing about this kind of treatment is that it works by increasing the amount of ‘good’ cells.  Much of our current treatment relies on trying to suppress our ‘bad’ cells.

Even more interestingly, you may remember that we posted about a promising (although rather off-putting) treatment called helminthic therapy.  This therapy involves worms which change your immune response and helminthic therapy is currently being trialled on several different kinds of autoimmune diseases.  When you have an helminthic infestation, your immune system responds by increasing the production of eosinophils which make the cytokine interleukin-5.

Dr Suzanne Hodgkinson says ‘ In this new treatment, it’s a matter of injecting the interleukin-5 and the body does the rest.  It’s both safe and effective and we think inducing the immune response by injection may be more attractive to people than swallowing parasitic worms’.

We say, please hurry up and start trialling this on us Birdshotters!  Anything to avoid worms!!

Read the full article at

http://bloodjournal.hematologylibrary.org/content/119/19/4441.abstract

A paper, written by doctors from the Department of Ophthalmology at University Vita-Salute in Milan, has reminded us of how important it is to make sure that we have the correct diagnosis.  Just because we appear to have typical Birdshot lesions, and are HLA A29 positive, does not automatically mean we have Birdshot.  It is really important to rule out all other possible causes for our symptoms before Birdshot is diagnoses.

The Doctors highlight a case of a 43 year old woman who presented with bilateral (that means in both eyes) vitritis (inflammation of the vitreous body – one of the symptoms of Birdshot) and lesions that looked like the typical birdshot lesions. She tested positive for HLA A29 and was diagnosed with Birdshot.

However, she did not seem to respond to immunosuppressants, and there were some neurological symptoms she was experiencing.  Her diagnosis was re-evaluated, and she was diagnosed with intraocular lymphoma – a very different condition to Birdshot.

The doctors felt it important to write up this case to highlight the importance of careful follow up of patients with chronic uveitis and re-evaluation of systemic symptoms and signs.

Read More: http://informahealthcare.com/doi/abs/10.3109/09273948.2012.689074

A Group of ophthalmologists (including Nick Jones, who has been very helpful to BUS in the past) and optometrists from the Royal Eye Hospital in Manchester have undertaken a vision related quality of life and employment survey on working age patients with chronic uveitis who are taking immunosuppressants (most of us with Birdshot take immunosuppressants).

Their findings are that, those whose vision had deteriorated to the extent that they were not able to drive, were the ones who were more likely to have a poorer quality of life.

Their conclusion is that chronic uveitis, even when well controlled, can have substantial effects on a person’s social and psychological health, and can lead to difficulties at work.

This is confirmation of what we have heard from many of you and, interestingly, the survey also suggested that work can be put at risk because, for example, patients have to take so much time off work visiting NHS establishments for tests, appointments, monitoring, etc.

Find the write up on this survey at:

http://www.ncbi.nlm.nih.gov/pubmed/22568885?dopt=Citation

We have long argued that we need a more coherent approach to Birdshot and we need services built around us, rather than trying to fit in to an NHS that often requires us to spend several days a month in hospitals and other health establishments.

Please, please remember to complete our own Quality of Life survey, if you have not already done so.  This information will help us argue our case more strongly, and hopefully help us get more co-ordinated services.