Dexamethasone Intravitreal Implant

The Department of Ophthalmology at University Vita-Salute in Milan, Italy has published a paper on their experience of treating difficult, uncontrolled and severe cases of noninfectious posterior uveitis (Birdshot is a noninfectious posterior uveitis) with dexamethasone intravitreal implants on top of systemic steroids.  They found that, of the 12 patients they studied, all had decreased uveitis activity, increased visual acuity and reduction in the macular thickness after 9 months.  Three patients were able to reduce their steroids.  Only 3 of the eyes had an increase in intraocular pressure.  Their conclusion is that dexamethasone may be a promising additional treatment for patients with sever posterior noninfectious uveitis which does not respond to immunosuppressants.

See the full text at

Access To Medicines

BUS was recently invited to participate in a debate on ‘How Can We Improve Earlier Access to Medicines for Patients in the UK?’  The debate was set up by Les Halpin, a very inspirational man who founded EMPOWER: Access To Medicine following his diagnosis of Motor Neurone Disease and realising that there were few medications licensed for this disease and that if research was undertaken on new medications, it would take many months or even years before  the medicine was available for use.

This debate was held at the King’s Fund in London and brought together a range of leading and influential individuals including:

▪   Lois Rogers, leading health journalist and contributor to publications including The Sunday Times, The Economist and New Statesman and consultant to the Department of Health and other government agencies

▪   Dr Richard Barker, Director of the Centre for Accelerating Medical Innovations, Oxford University and former head of the ABPI

▪   Yogi Amin, human rights and medical ethics lawyer, Irwin Mitchell

▪   Alastair Kent, Director of Genetic Alliance UK

▪   Professor Sir Peter Lachmann, Emeritus Sheila Joan Smith Professor of Immunology in the University of Cambridge and a fellow of Christ’s College

BUS has received a thank you letter for its input into the debate, which is copied below and gives information on how you can become involved in this campaign and how you can access the film of Les Halpin talking about the campaign:

Empower: Access to Medicine

I would like to personally thank you for attending the Empower: Access to Medicine debate at the King’s Fund last week. We appreciate your interest in and support for such an important subject.

I am very heartened by the response to this campaign. Whilst there are many separate discussions that are taking place on this issue, my main interest is in the voice of the patient which I believe has been least heard to date.

I am therefore delighted that patient advocacy groups from around the country have responded so positively. My key aim moving forward will be to support a unified patient voice so we can together deliver much needed change.

A longer and more comprehensive version of the film that was shown at the debate is now available online at and I would urge you to share this with colleagues and networks that may also be interested.

You can also join the conversation online through Twitter – find us on @empoweratm

The Empower team is now defining its campaign objectives as we continue to reach out to interested individuals and groups and we will keep you informed of our next steps.

In the meantime, if you have any questions or suggestions about the campaign, please contact Karen, James or Sarah at JBP on 0203 267 0074.

Yours sincerely,

Les Halpin

Founder, Empower: Access to Medicine


Orphan drug status for GEVOKIZUMAB

Gevokizumab is a monoclonal antibody that shuts down inflammation brought on by a protein in our bodies called interleukin-1 beta.

The pharma that produces Gevokizumab has been focusing on diabetes but now, with the orphan drug status , it means that it will get financial help to trial the drug on non-infectious and pan uveitis.

We don’t know, at this stage, whether is will work on Birdshot, but it is exciting to see new drugs coming on to the market.  It is even more exciting to see pharmas getting orphan drug status for new medications.

Read the full article at:

Accessing unlicensed medications

The Medicines and Healthcare products Regulatory Agency (MHRA) is the agency that regulates all new medicines.  They weigh up the risks and benefits of each new medicine, following the completion of phase III trials and then decide whether to license it or not.  Some of us with Birdshot will know that we are unable to get some medications that may be licensed elsewhere (e.g. in the US) or that have been tested at phase III trials, but have to go through the sometimes lengthy procedure to be licensed.

The MHRA is now consulting on whether they should provide early access to medicines before they are formally licensed.  The consultation period ends on 5 October, and if the MHRA goes ahead with this scheme, it may mean that those of us who have tried all the more traditional approaches to controlling our Birdshot without success can get hold of newer medications earlier.

There are a few provisos, of course!  The scheme will be voluntary and limited to medicines that show a “significant advance in treatment in an area of unmet need”.  The MHRA also expects to limit the scheme to only one or two medicines each year.  Finally, the scheme will be limited to those medicines that have reached phase III trials (apart from exceptional cases – yet to be defined).  If this scheme goes ahead, the MHRA will provide an opinion of the risks and benefits of the medicine on its web site to help clinicians and patients decide, and it would then be up to the funding body (your local clinical commissioning group made up of GPs in your area; or specialist commissioning group) to decide whether to fund the medicine or not.

So, even if the scheme is launched, there will still be hurdles to jump over, but at least it provides hope for those of us who are struggling to get hold of medicines on the NHS which are not licensed here.

It would be really, really helpful if our patient and professional members could give their comments to the MHRA

To read more about the proposed scheme, please click on the link below:

If you want to give your comment on this scheme, you can email by 5 October 2012

Birdshot or Not?

We recently posted a news item about the importance of being sure that the diagnosis of Birdshot is the correct one.  This is because each different eye condition requires different treatment.  For those of us with Birdshot, we really need early and accurate diagnosis and speedy treatment designed for Birdshot (and not for some other uveitic eye condition).

There are several eye conditions that produce the ‘typical’ cream coloured lesions that are so characteristic of Birdshot.  We have just come across another case which clearly demonstrates why it is so important to not immediately diagnose people with Birdshot if they present with these cream coloured lesions.

This case involves a 9 year old girl who presented at the department of ophthalmology in Samsun, Turkey.  On examination, she had numerous oval, irregular cream coloured choroidal lesions which resembled Birdshot lesions.  However, these doctors went on to test further and diagnosed this girl with sarcoidosis.  They wrote the case up to demonstrate how important it is to think of all the possible diagnoses, when seeing ‘birdshot type’ lesions.

The lesson is that not all ‘characteristic Birdshot lesions’ mean that you have Birdshot!  This case illustrates really well why proper diagnosis is so important.

Read the full article at:






Metformin – used for diabetes, but does it help uveitis?

Researchers from Texas University (Galveston Medical Branch) have discovered that Metformin, a drug used to treat diabetes, could help control inflammation in uveitis.

The researchers found that in laboratory rat and cell culture experiments, Metformin substantially reduced uveitis.

Even more excitingly, they found Metformin also prevented uveitis developing in rats. It seems that Metformin may have both preventive and therapeutic effects.  In short, Metformin inhibits the processes that cause inflammation.

This drug is already licensed and available for diabetes – it surely should not take too long for it to be trialed on uveitis?

Read the full article at:


How are patients involved in licensing new medications?

On 13 February 2012, Genetic Alliance UK published a report of a Citizens Jury’s findings.  The Citizens Jury was tasked with deciding on the balance of risk versus benefit of new medications for serious and rare diseases.  We are hoping that this report will influence the regulators for those of us with rare, serious diseases, who struggle to find appropriate medications.  The regulators often take a very cautious view about the risks of medications – however, many of us with serious conditions are prepared to take risks (as long as we are fully informed) if the benefits are that we can continue to live a good enough life.

This is something we, with Birdshot, already face.  We know that our medication regimes can be toxic, but we make the fully informed decision to take medication in order to preserve our sight.  That is our choice.

Rea was a member of the Citizens Jury – here she is with her fellow jurors.

More information on the Citizens Jury can be found at:

Here are the findings of the Citizens Jury:

1. Regulators should include psychosocial factors in their decision making – Jurors would like to see regulators broadening the range of issues which they consider when deciding whether to approve a new medicine. Jurors have generated a list of 25 psychosocial factors that are important to them, to be included in the assessment of risks and benefits of new medicines.

2. Regulators should be more permissive for those treatments for people with rare and/or serious conditions-Because of their often unique circumstances, patients with rare and/or serious conditions may well be willing to take greater risks than the system currently allows. They should be given that choice.

3.  Patients should be more involved in all stages of the process, from setting the research agenda, to post-marketing authorisation decisions – Patients’ experiences and preferences should be included at all stages. Patient representatives (such as patient group members) should be supported to be joint decision makers, alongside clinical experts, throughout the process.

4. Patients should be better supported to make their own decisions – Decision-making about new medicines is challenging, but possible for most patients provided they are given adequate information and support? (or something like that). Jurors generated a list of questions to help guide patients when deciding on their own treatment options.

Bisphosphonates (Alendronic Acid) and possible side effects

We have written quite a few articles about bisphosphonates (we, with Birdshot are usually prescribed bisphosphonates, such as alendronic acid, when we are on steroids).  Bisphosphonates help to protect us against the damage to our bones that steroids may produce.

A recent study from British Columbia looked retrospectively at people who were first-time users of oral bisphosphonates and who had visited an ophthalmologist between 2000 and 2007.  This group was compared to people who did not use oral bisphosphonates.

The study concluded that the incidence of uveitis in first-time users of oral bisphosphonates was slightly higher than for non-users and the incidence of scleritis was quite a lot higher in first-time bisphosphonates users.

The findings were that people using oral bisphosphonates for the first time may be at higher risk of scleritis and uveitis than non-bisphosphonate users.

This is not really new information – we have known this for some time. It is important always to keep a check on our medications and side effects, and to have strong relationships with our consultants so we can fully understand the risks versus the benefits of each medication.

The full article can be found at

Is low dose methotrexate an effective Birdshot treatment ?

Methotrexate is a cancer drug that has been used since the 1950s. It acts by inhibiting the metabolism of folic acid. In low doses, methotrexate is a safe and well-tolerated drug in the treatment of certain autoimmune diseases.

A study in Holland (by Rothova A, Norel AO, Los LI, Berendschot TT) looked at the effectiveness of low-dose methotrexate treatment for Birdshot Chorioretinopathy and how well it prevented visual loss in Birdshot

The retrospective case series involved 76 patients with HLA-A29 positive BSCR. 46 of these patients were followed for 5 years, 18 for longer than 10 years.

The treatment regimens were divided into the three groups:

1) No systemic immunomodulatory treatment

2) Treatment with systemic corticosteroids

3) Treatments with methotrexate

The group of patients who had methotrexate treatment showed better visual outcomes than those patients on just corticosteroid-based treatment (visual outcomes remained unchanged). The untreated patients visual outcomes were worse.

(Retina 3 March  2011)


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!