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!



Sirolimus – New approach, Old Drugs

We read about a phase 2 trial on the Birdshot Lefora Forum. The trial is being conducted at Johns Hopkins University, USA with sirolimus, also known as rapamycin and Rapamune®. Sirolimus is an immunosuppressant that inhibits the response to interleukin-2 (IL-2), and therefore blocks activation of T- and B-cells. It has a similar immunosuppressive effect to tacrolimus, but tacrolimus inhibits the production of IL-2 (rather than inhibiting the response).

This seems like a promising trial and, depending on the results, sirolimus may well be yet another useful medication for people with Birdshot who do not respond so well to the ‘traditional’ medication regimen of prednisolone and mycophenolate mofetil.

The clinical trial information below was obtained from

Phase 2 of the trial is looking at the safety and effectiveness of two different doses (440mcg/mcL and 880mcg/mcL) of sirolimus, administered intravitreally (injections inside the eye) in patients with uveitis.

The trial is examining whether these doses can be used to control inflammation in non-infectious uveitis, whilst avoiding the potential complications associated with systemic drugs (i.e. drugs that are administered orally, subcutaneously, intramuscularly, or intravenously and thus can affect the whole body). Therefore, if proven effective, it may offer a safer way of controlling inflammation.

It does seem that quite a lot of work is now being undertaken around a range of non-systemic solutions – we have already reported on Retisert® and Ozurdex® – and non-systemic therapy may well be a safer way forward.

Birdshot Patients’ experience

It is early days but this is the latest news on the novel sirolimus treatments that we have heard from 2 people who have been on this particular trial.

” I was in the first sirolimus clinical trial at Hopkins and I’m waiting for the second series to begin. It has been approximately 6 months that I have not received injections and I’ve only had a couple of flare-ups. I can not tolerate steroids and Cellcept®, LX211 was ok, but taking 12 pills a day was not something I liked to do. The shots are my choice, one in each eye every other month. There will be a new sirolimus trial beginning any day now. I recommend it.” February 2011

Here is another person’s positive experience. This time on Phase 2.

“It has now been 5 months and I think I am doing great! I am going thru a battery of tests next month, but I am hopeful I will receive good results. What I do know is I am off Cellcept® and Neoral®since November, and prednisone has been reduced from 60mg to 8. I no longer have floaters, flies or other types of bugs and the glare has greatly improved. So much in fact I can drive at night under certain conditions. Johns Hopkins is starting Phase 2 and 3 at the same time and they are having great results with more than one disease. I think it is wise to learn more about this trial.

I believe 200 hospitals will also be doing this trial very soon. Sirolimus is the drug that is injected. So far so good. The only side effect I have had so far is loss of hair, but it is slowing down on the amount of hair lost.” June 2011

A bit more about Sirolimus

Sirolimus (also known as rapamycin) is an old drug. It was approved by the FDA in 1999. It was originally developed as an antifungal agent. However, this use was abandoned when it was discovered to have potent immunosuppressive and antiproliferative properties. It has since been shown to prolong the life of mice and might also be useful in the treatment of certain cancers.

What’s of interest for us?


  • Compared to calcineurin inhibitors (such as ciclosporin, tacrolimus, azathioprine), it is less likely to cause kidney damage.
  • It is available in generic versions so it is not prohibitively expensive.
  • It has been used for some time for other conditions (not for uveitis) so its side effects are generally known.
  • There should be no systemic side effects as it is being injected invitreally.

We look forward to hearing the full results of the study once it is completed. If it is being rolled out across 200 hospitals it is possible that some of these hospitals could be in the UK.



Uveitis Treatment in the US

We came across an article, published in Medpage (an on-line source for latest medical news), which was published in October 2010.  It highlighted the fact that uveitis treatment in the US falls short of recommendations.   It is based on a paper presented to the American Academy of Ophthalmology by Nguyen Q, et al and this paper can be found at:
“A cross-sectional study of the current treatment patterns in noninfectious uveitis among specialists in the United States” AAO 2010; Abstract PA037.

The study was based on the responses from a number of consultants in the US.  The response from these consultants showed that most ophthalmologists do not rely on evidence-based treatment guidelines for uveitis and a survey showed that their practice patterns often deviated substantially from the guideline recommendations.

It also showed that steroids were used more intensively and immunosuppressants less intensively than recommendations and guidelines called for.

Also, 75% of the respondents said they either did not use or or were unaware of guidelines issued by two expert groups in 2000 and 2005.

The reason for the guidelines is because of the side effects of steroids and the knowledge that has been gained to date of what works on uveitis (we with Birdshot need immunosuppressants to try and get us into remission – steroids only control the inflammation and do not play a part in retraining our immune systems).   The guidelines were also introduced because it had been noted that people on long term steroids doubled their risk of cardio vascular disease (heart attacks).

The full article can be found at:

Obviously, what we are concerned about is what is happening in the UK!  So, below is a list of points to think about.

Points to note

  • Most of the treatment in the US was with steroids at far higher doses and for a far longer duration than recommended in the guidelines – we do not want you to be needlessly worried.


  • Although this study relates to the US, it may equally apply to the UK.
  • There are no guidelines produced in England  and Wales for our specialists to follow although Scotland is in the process of producing their own guidelines via their own clinical network
  • If you have been on high doses of steroids for more than three months and not been offered other immuno-suppressant type drugs you should  ask your consultant about why this is and seek another opinion if you are not satisfied with their answers to your questions.


NICE recommend eye implant Ozurdex 6 June 2011

We have posted about the Ozurdex implant before and recently learned that the National Institute for Health and Clinical Excellence (NICE – the body in the UK that provides guidance on what medications can and cannot be used here) has recommended Ozurdex drug-infused eye implant (made by the pharmaceutical Allergan) for the treatment of macular oedema.

Macular oedema is inflammation and a build-up of fluid in the macula caused by blockage in a retinal vein (this blockage in the retinal vein is known as RVO – retinal vein occlusion).   Macular oedema is the leading cause of vision loss in people with RVO.

The Ozurdex implant contains a steroid called dexamethasone, which is slowly released into the eye to control the oedema (the fluid build-up), reduce inflammation around the RVO and therefore improve vision.

It is implanted with a specially-designed applicator and can last up to 6 months.

Ozurdex has proved very promising for macular oedema and Allergan are now conducting trials to see if it can also effectively treat wet age-related macular degeneration.

As macular oedema is one of the possible complications of Birdshot, it would seem that these implants could soon become a better way of treating this sight threatening problem.  We know of at least two of our members who are currently being offered these implants as a way of treating their macula oedema.

Mr Ian Pearce, Consultant Ophthalmologist and the Clinical Expert representative of the Royal College of Ophthalmologists, said: “The availability of a licensed, effective and now NICE recommended treatment is a significant step forward for management of RVO patients in England and Wales and we look forward to ophthalmologists providing the treatment as soon as possible.”

For more information, visit Allergan’s Ozurdex website: where there is a link to frequently asked questions about the Ozurdex implant.

Counterintuitive Cure

“The human body’s immune system can quickly track down and kill cells that don’t belong. Take certain kinds of bacteria: molecules on their surfaces flag them as foreign invaders, alerting the body’s defenders to the breach and drawing a full-fledged attack on anything waving that molecular flag. But sometimes the system mistakenly attacks the body’s own cells. The result is autoimmune disease, such as type 1 diabetes, in which the insulin-producing beta cells of the pancreas are attacked and destroyed by T cells. ” Read about this in an article by Katie Moisse entitled: Counterintuitive Cure: A Nanovaccine That Stops Autoimmune Disease by Boosting the Immune System which describes a new treatment which prevents type 1 diabetes in mice by turning the immune system on itself.

It seems to us that direct parallels can be drawn for our disease Birdshot Chorioretinopathy and this idea could be useful in finding us a cure.

Rea and Annie

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.

Dexamethasone for Ocular Inflammation

A new trial, conducted by the Department of Ophthalmology at the University of Illinois has just reported on the efficacy of Dexamethasone (known as Ozurdex) and concludes that ‘The newly approved dexamethasone implant, Ozurdex, is a useful addition to our local armamentarium in the treatment of noninfectious intermediate and posterior uveitis given its efficacy, safety, and ease of use in the outpatient’.

It also concludes that, on the available information, ‘The single injection, 26-week data indicate that the implant is well tolerated and produces meaningful improvements in intraocular inflammation and visual acuity that persist through 6 months. The available 6-month data also indicate that this implant confers much less of a risk of ocular hypertension than other forms of intraocular steroid therapy. However, future longer-term trials are needed to evaluate the efficacy and safety data in patients who receive multiple injections.

We know that some of you are already on Dexamethasone (Ozurdex), and this sounds like good news for others who are not responding to oral immunosuppressants and steroids. Dexamethasone has received FDA approval in the US (FDA is the equivalent of our NICE – the National Clinical Institute of Excellence) so we should be able to get hold of it in exceptional circumstances.

Is anybody on Dexamethasone? Or Retisert (the article seems to conclude that Dexamethasone may be more effective, with less side effects than Retisert)? Anybody want to comment on this?

The full article can be found at:


Pilot study to explore motion perception

We wrote an introductory piece about this earlier this month and are delighted to now be able to include a short description  written by Nacima Kisma  a researcher at Moorfields who is helping consultant Mark Westcott with the study.  It helps to explain what they hope to achieve from it.

The monitoring of birdshot chorioretinopathy (BCR) cannot be done on a clinical basis only. Clinical signs are usually not immediately detectable when the disease does progress. We therefore need ancillary testing to help us with adjusting and reducing the systemic treatment as quickly as possible.

Electrodiagnosis testing (EDT) is of good value for the monitoring of the disease but does take a long time to perform and is not easy to schedule. Moreover, it can be uncomfortable because of corneal contact lenses, electrodes and flashing lights use.

Visual field testing is much easier to schedule and less uncomfortable than the EDT. The Moorfields Motion Displacement Test (MDT) is a kind of visual field test performed on a laptop. There are 32 lines displayed on a grey background. The lines do move randomly. The patient has to fixate a central spot and to click on the computer mouse when he sees a line moving.

Because it is easy to understand, quick to do (less than 2 minutes) and possible to display on a laptop, we hope that it would be of better use than the other field tests for the monitoring of the disease.

We have decided to look for abnormalities of motion perception in 20 birdshot patients from Moorfields uveitis clinics as a preliminary study. The pilot study is nearing completion and was open to Moorfields patients only.

If this study confirms motion perception losses in BCR, then we postulate that measurement of motion perception losses may be useful in monitoring the disease.

Good outcome from steroid implants

An American study was published earlier this year, looking at the outcomes for Birdshot patients who had been on steroid implants (the longer name for these steroid implants is corticosteroid intraocular devices). 22 Birdshot patients were involved in the study which looked retrospectively (over a 3 year period) at the outcomes.

The outcomes were extremely positive, and showed that the steroid implants had significantly improved vision, controlled inflammation and in the majority of cases stopped the need for other medications. As always, there are some down sides – in the case of steroid implants the main side effects were a high incidence of the progression of cataracts and a high incidence of intraocular pressure (called glaucoma).

If you want to read the full study, go to the American Journal of Ophthalmology.

We at BUS, are really excited that there seems to be a growing number of suitable alternatives for people who are not responding well to oral steroids and various different types of immunosuppressants, or who cannot tolerate these medication regimes.

The importance of a published study is that it provides evidence for patients and consultants who might be struggling to acquire steroid implants from their primary care trusts or health organisation, or who are looking for alternatives to oral steroids and immunosuppression.

For those of you who attended the Birdshot Day in September 2010, you will remember that steroid implants were discussed at some length on the Day. There was one attendee who had these implants and was extremely passionate about them.

If you want to hear more about steroid implants for the Birdshot Day, please go to our clip on retisert implants at:

Since the Birdshot Day, we have heard from one attendee who says that the Day changes her life and equipped her with enough information to be confident in moving to steroid implants. She reports that she can now see clearly for the first time for many years without the aid of immunosuppressive treatment. We also know of another person who has been offered them on a special trial and a third person who is discussing this option with their specialist.

We are so pleased at the more rapid progress of alternative treatments and we are delighted that the Birdshot Day has equipped attendees with the means to work in partnership with their consultants to explore all possible options. We are even more delighted to see that so many more consultants are now listening to their patients and there is a two way dialogue and a real exploration of all options available. Let’s hope that we can also make some headway in finding out the reason we get Birdshot in the first place!

Stem cell therapy may well restore sight

The link above takes you to an article on how stem therapy might be able to help people with glaucoma in the future.

Rea and I are not experts on this, but we are assuming that if stem cell therapy can grow retinal cells for people with glaucoma, the same could be true for people with Birdshot.

It’s a “brave new world” development and we need to monitor and watch this development closely.  It could give hope to people with sight loss who, until now, thought there was nothing that could be done.

The Cambridge scientist and ophthalmologist involved in the research, Professor Keith Martin said:-

“We are doing it in animal models and results are so encouraging that we hope to move forward to testing on humans soon.

Stem cell treatment is moving forward very fast in many branches of the medicine and we are seeing some of the best results in eyes.”

He added: “We have concentrated on glaucoma because it is so common, but there are quite a few diseases that affect the optic nerve, such as inflammatory diseases, so it could be used here too.”

As we all know Birdshot Chorioretinopathy is an inflammatory disease of the eye. We don’t know how long these developments will take to progress, but we live in a fast moving world and it gives us hope.

This research has received funding from Fight for the Sight, a charity that raises money for research into sight threatening conditions.  We have a runner running for us in the London Marathon in aid of Uveitis Research that Fight for Sight is also supporting and if you want to make a donation towards this project you can do so at Ken’s Just Giving page.

Annie and Rea