Birdshot Chorioretinopathy Research Network

We have finalised a date  for the inauguraBirdshot Research Network meeting, to be held in  Birmingham on Tuesday 18th October.  We have written to a few uveitis consultants, but it is possible that we may not have written to yours.  If you are keen for your consultant to be involved in the Birdshot Research Network you can ask them for us by printing off a copy of the letter that you  will find here  and giving it to them yourself.   We would love as many Birdshot specialists to be involved as possible, but unfortunately spaces at the meeting are quite limited, so they will need to get in touch with us  quickly to let us know of their interest.


Annie and Rea

NB Unfortunately this post applies only to people in the UK.

Vitamin D – the Sunshine Vitamin

Many of us know from personal experience how osteoporosis can affect one’s quality of life. The drugs commonly used for Birdshot Chorioretinopathy treatment can put you at risk.

Bone health is something that anyone who is on prednisolone for any length of time must discuss with their her/his GP. The risk to your bones from steroids increases with higher doses of steroids (prednisolone) for periods of three months or more. The problem is that when you are first prescribed steroids for Birdshot, you just do not know how long you are going to be on them as no one can be sure how hard the disease is going to be to treat.

The question is what do you do to prevent bone loss?

Vitamin D is a crucial ingredient in the process of absorbing calcium and potassium into the body. Sadly more than 50% of the normal UK population have insufficient levels of vitamin D and 16% have a severe deficiency. (Pearce and Cheetham 2010/Hypponen and Chris Powers 2007).

Vitamin D has a complex absorption pathway. It is produced in the skin by a photochemical reaction that is stimulated by sun rays (ultra violet light). The amount of sunlight required to obtain adequate vitamin D is approximately 20 minutes a day (Holick 2002) outside of peak sunshine levels. So the best way to produce vitamin D is to have unprotected sunshine exposure for about 20 minutes a day, exposing only less sensitive skin parts such as the arms and legs in the morning and afternoon/evening.

Skin pigmentation comes into play as well. If you have dark skin you require approximately six times more sunshine than people with fair skin. Also people with a history of caridovascular disease, obesity, history of cancer, malabsorbtion disease and renal disease have a higher risk of being vitamin D-deficient.

If like most people with Birdshot, you are on immuno-suppressants as well as steroids at some point in your treatment, you are likely to be following the instructions to cover up and use high-factor sun creams to avoid the skin-cancer risks. You are therefore more likely to have low vitamin D levels.

Only a relatively few foods contain substantial amounts of vitamin D. The best sources are oily fish and cod liver oil. Farmed fish may have less vitamin D than wild fish. Egg yolk, oliver and wild mushrooms contain small quantities but the amount in most vegetables is negligible.

You might like to look at this website if you are interested in checking nutritional information for food.

The recommended daily intake for vitamin D is 400 IU per day for an adult and unless we consume this recommended amount, we are all at risk of osteomalacia and even rickets.

If you don’t already take a calcium-vitamin D supplement, please ask your GP about it because you may need it, at least whilst on steroids. (You can have blood tests to determine if you are deficient or not, and tests to check on your calcium absorption.)

Important message to take home:

  • Calcium should not be taken at the same time as mycophenolate mofetil (Cellcept ®) as it may decrease the absorption of mycophenolate by your body and hence reduce the effectiveness of the it. You should take calcium supplements as many hours apart as possible to reduce this potential.
  • It is really important to discuss taking calcium and vitamin D with your GP because, for some people, excess vitamin D can cause problems – e.g. if you have sarcoidosis (which can also affect the eyes) excess vitamin D can make sarcoidosis worse.
  • Weight-bearing exercise does help to promote healthy bones; go to the gym; take the stairs as opposed to the lift; wear a ruck sack with a litre bottle of water in it while you do the house work; go swimming; take up belly dancing or whatever you fancy. Remember that exercise is also great for reducing inflammation, and Birdshot is an inflammatory disease.
  • Exercise will also help to prevent the likelihood of falls and consequent broken bones because your muscles will be stronger.

We cannot emphasise enough that any exercise is better than none!



Potential Herb and Supplement and Drug interactions

Many of us take a range of herbs and supplements in order to try and keep ourselves well throughout our often toxic treatment for Birdshot.  We should always check these herbs and supplements with our consultants, there can be adverse interactions between these and medications we are taking.  We should all remember that just because we can buy them over the counter, this does not mean they are always totally safe, especially when we are taking a range of medications.

We have attached here a PDF which identifies potential herb and drug/medication interactions.  It lists most of the commonly used herbs.

We thought that the most striking ones were:

  • Licorice which increases the level of drug in our body by decreasing drug metabolism (i.e. the rate at which our bodies absorb the drug).   **** (Please see comment number 2 below)
  • Polyphenol – contained in Chamomile and Green tea, lime flowers and Rosemary which is said to reduce the absorption of iron.
  • Bilberry and Tumeric might affect your aniplatelet activity (antiplatelets help ensure we don’t get thrombosis)
  • Valerian may increase the effect of CNS depressants (sedatives or tranquillisers) or alcohol

Hopefully, this article will alert us all to the potential consequences of taking large doses of some herbs, if we are on medication.

Birdshot Day DVD

The Birdshot Day DVD has finally arrived. It contains recordings of all of the days talks, interviews with people with Birdshot, health professionals, charities and low vision specialists who attended.

Today we have written to everyone who came to the day telling them about it and asking if they want to receive copies. We have written to our consultant specialists to see if they want copies, but we also want to hear from you if you would like to receive a copy as well. (subject to availability!)

We have a limited stock, and what we are suggesting is, rather than charge for the DVD, you can make a small donation to help pay for the postage and packaging costs, with anything left over going towards a future Birdshot Day. To do so, please press the donate button on the website.

If you would like a copy, please email us and let us know where you would like the DVD delivered to. Annie and Rea


Credit: David Bethell graphic artist – DVD cover design

Implants – will you share your experiences please!

We are looking for individuals who have had either type of implant, Retisert or Ozurdex, who would be interested in sharing their experiences about this type of treatment with people who are considering treating their birdshot in this way.

We believe that there have been more of this kind of operation in the USA than in the UK and would really appreciate it if anyone who reads this post, who has had this done could get in touch with us at via our contact form, so we can link you up with a couple of our members who are anxious to chat to people who have had this done, so that they can get some first hand feed-back.

Alternately, if you don’t want to email individuals directly we would love to have a write up on your experiences which we could publish on the website for all our members to read, or you could log-on to our forum and post details of your experience there.

Thanks. It is great to have a Birdshot community like this so that we can share experiences. We look forward to hearing from you soon.

Annie and Rea

Is green tea more than just good for you?

Some novel research has been undertaken into Green Tea.   It was published in Immunology letters 2011 May 20, and is entitled:- “Induction of regulatory T cells by green tea polyphenol EGCG.”

The study  provides evidence as to why green tea might help to modify  immune system behaviour and hopefully provides the foundation for future studies to further examine and evaluate dietary strategies to see if they might be used to help to control the immune system.

We are not sure how many of gallons of green tea you would need to consume to produce the required effect!

If you want to read more technical detail about this research, follow the link below.


We know some of our members have told us that they like to drink green tea in the hope that it might do them some good.    If you are interested in some green tea recommendations – here are some  varieties to try, courtesy of our Ozzie friend Neil who has obviously got into it in  a big way on a work trip to China.

I had a ten day aid mission to Chong Qing central China and fell ill on inward flight with shocking cold and cough.

All meetings with Chinese involved a thermos of green tea.  I found it stopped my cough so I became the green tea monitor for the duration and the Chinese thought I was a definite convert!

For variety, try japanese green tea with baked rice flavour added.

Mid level good quality green tea is called Long Jin

Personally, I hadn’t thought of it for wider use than digestion.”  Neil

Please can you tell us where you live?

If you have a birdshot diagnosis,  please can you  kindly tell us which town/village or city do you live in and which hospital are you treated at.  Please do this via a  short email to Rea and Annie at

We have access to mapping software and thought it would be interesting to map the geographical location of people we know with Birdshot, together with the centres we know where Birdshot is treated.

We  already have this information for around a hundred of our members,  but it would be great if it could include a bigger group.

This map is something we wish to develop.   It will help us pinpoint areas in the country where we could have a local support group.  It will also be interesting to see if there are more people with a birdshot diagnosis in particular geographic locations.   Who knows what we might discover!

Overseas members are also welcome to let us have this information as it will be very interesting to do this globally as well.

We look forward to hearing from all of you.


Annie and Rea


Article about Birdshot in Optometry Today

Below is a link to an article which appeared in the April 2011 edition of Optometry Today. ” Birdshot Case Study“.    It was written for us by Emily Kirkby, a student who was involved in the Birdshot Day in September 2010, with help from Rea, her consultant Nigel Hall, Narciss Okhravi and other members of the Birdshot team.

As  most of us with a Birdshot diagnosis know, Birdshot Chorioretinopathy is difficult to diagnose, particularly in the early stages before the tell tale lesions appear.  A  case study like this that appears in a widely read optometry magazine should help to make optometrists more aware about this rare autoimmune eye condition.  Opticians are the people we often first turn to when we have eye problems.  With Birdshot, it is really important to get speedy treatment and if the optometrist or optician is informed about it, we stand a chance of this happening.

Please let your optometrist know about this article – help spread the word.

Neil’s story

An Australian Birdshot colleague of ours called Neil, recently wrote to us to tell us about his experimental approach to supplements. He has been trying to find a way of improving his vision through supplements and told us why he had decided to do this.

Over the years he has been on a number of the usual toxic treatments. Following a recent flare he was put on prednisolone and methotrexate. He reports that after some months on the methotrexate, a wavy line suggested his eyes were continuing to deteriorate and 15 mg/day of prednisolone was added for a couple of months after an ERG result showed rods were bad; cones were indicating nobody home!

Here is Neil’s story in his own words (much of what he says will ring bells with many of us).

“I noticed an article on increased retinal activity following a trial of a group of people taking lutein, nicotinamide (vitamin B group) and vitamin E, so thought I might as well try it for myself to see if it made any difference to my ERG tests, on the assumption that it would not have a negative effect.

To mimic the study, I took a bilberry and lutein tablet, a multi-B and vitamin E tablet. In addition I took folic acid in the Multi-B which I understand helps with tolerating Methotrexate.

The ERG in January and check up in March showed that the left eye reading level had returned to the level two years previously (couple of extra lines) and I am seeing a little more when I enter a darkened room.

Retinal inflammation has gone with prednisone and I can read with my left eye again.

So all I can say is the lutein, nicotinamide and vitamin E didn’t harm my outcome.

Here are the details of what I took.

The Health food shop found me NutriVital Mega B High Potency tabs one per day

I added Natures Way Vitamin E 500 iu – one per day although I didn’t take quite as reliably)
Bilberry 10,000 plus with lutein by Micro genics vision deficiency formula – one per day

I also used Nutralife Bilberry 10,000 plus + lutein complex as the tablets were easier to take from a bottle rather than in foil.

Subsequently my GP recommended I increase the folic acid to 5mg/day to counter methotrexate effects, but the improvement was evident before then.

I was on 10 mg methotrexate once per week for a few months after complaining of loss of central clarity in left eye and an ERG test that showed basically non-detectable response to rods and cones with some small response to flashing light, but not for night vision. Some wavy lines at the edge of the computer screen worried me and a scan showed some retinal swelling in central left eye, so (reluctantly) I added 15 mg/day prednisone.

I tapered this back myself to 10 mg/day until just before the next ERG was due… then…
Coming back from a fishing trip I noticed light poles bent half way up – 1m to the right through my left eye, so I boosted for a few days to 20mg/day prednisone to try to cheat on my ERG.

After verbally savaging my 20 year old son and snapping at my wife, I admitted defeat and reduced the dosage of steroids.
ERG showed 50’s and 60’s for rods and cones this time and I felt night vision had returned to vaguely useful entering a dark room and possibly dusk driving. (evidently normal range is 250 to 600 so I hardly starred it, but it’s better measurably)
Stayed on 12.5 mg/day prednisone for a couple of months and bent poles went away – slight horizontal bump in reading 12 point letters but left eye continues to improve and down to 10 mg/day prednisone.

Eye section scan showed rods and cones in left eye looking reasonably normal thickness in parts of scan which is interesting as I feel my peripheral vision has improved in that eye. Eye chart was about 2 lines better with pinhole as glare still a problem so I’m back to 2009 levels on the irrelevant eye test.

My choice of sunglasses has changed from dark grey or yellow to light grey polarised and I can almost say glare tolerance is improving as a consequence of this choice for driving.

Can’t say if prednisone or supplement has contributed to improvement but I continue to take both as the trial lasted 12 months and I am 7 or 8 months on from trying it.

Red wine, chocolate and thai curries are also a feature as is dark matured Australian Bundaberg Rum with Coca-Cola, so feel free to adopt any that appeal – with lots of fresh fruit.”

LoL Neil



Atypical Birdshot?

Anyone out there with symptoms that don’t seem typical for Birdshot?

How many people are affected in just one eye? Many consultants believe that Birdshot is bilateral (i.e. it affects BOTH eyes) and would not diagnose Birdshot if it affects just one eye – do we think this is true? If it is not Birdshot, then what is it?

How many people have pain in their eyes? Birdshot is thought to be painless. I know that I have very painful eyes, particular if I move them (shooting pain deep in the eye), and I know of at least two others who say the same. Anyone else?

How many people have been diagnosed with Birdshot but do not test positive for HLA A29? Again, some consultants would refuse to diagnose Birdshot if there is no HLA A29 positive test. What do we think?

How many people have strange visual symptoms which baffle their consultants? For example, I seem to have images left on my retina for a long time. I will put my keys down, and then I see my keys on a range of other surfaces as I look around, making it very difficult for me to find my keys again! I also have illusions – I will be walking down the street, and I will see a very large cow walking towards me – impossible, I know. What I think is happening is that there is a large shadow, and my brain tries to make sense of this by accessing its filing cabinet to find something of that shape and size, and interprets it as a cow!

How many people have found that their brain seems to have slowed down when trying to see? For example, I will look at my emails, and although I can ’see’ them, I cannot actually read them – the mass of information in a long list just does not compute in my brain – its seems like gobbledegook – although if I look at individual words, I can make them out – I just can’t make sense of the totality of it.

Any other strange symptoms people have? Or things that seem atypical of Birdshot?

We are trying to understand the complexities of Birdshot, so it would be really good to hear all your stories. That way, we may be able to understand whether people have been possibly misdiagnosed, or whether Birdshot presents quite differently in different individuals, or whether there are a range of other problems that masquerade as Birdshot.

As always, we want to thank you for your interest in Birdshot and this website – we have had a huge influx of new members recently and each new member brings more knowledge and understanding of Birdshot. Thank you all, and we would be grateful for your feed-back on atypical (or typical) signs of Birdshot.