BUS is delighted to announce that we are once again a partner charity involved in the Fight for Sight Carrots NightWalks. These fun night-time sponsored walks are helping to raise thousands of pounds for research to prevent sight loss and to treat eye disease. Fight for Sight small grants awards have already benefited birdshot research. Continue reading
BUS has had an enquiry from a member who is in the UK who would like to email or talk to someone who has had a vitrectomy. Continue reading
Birdshot Uveitis Society has noticed that there have been a lot of new development on stem cell research in the news lately which offer new hope to those whose rods and cones are losing their function. Here are a few examples which caught our eye in January and which offer hope for Birdshotters in the future:- Continue reading
The National Birdshot Research Network (NBRN)
The National Birdshot Research Network will next meet on Thursday 13th March in London at St Thomas Hospital in the afternoon. Continue reading
Birdshotters who have been receiving Avastin® to deal with their macula oedema will no doubt be interested to read the results of this recent study which compares intravitreal bevacizumab (Avastin®) versus the steroid triamcinolone. The trial in question concerned people with diabetic macula oedema. Continue reading
We are often approached by people who are clearly worried about starting treatment for their birdshot. Because of this, we decided to publish a ‘question and answer’ section on the website. We hope it will provide you with some much-needed reassurance and answers to many of your questions.
Much of the ‘question and answer’ section may appear to be just common sense, but BUS thought it useful to gather the information together in one place. We also hope it will be helpful to those who are newly diagnosed and who are looking for advice on how to stay well while on immunosuppressive therapy.
Members of the the BUS Standing Advisory Committee and National Birdshot Research Network have been involved in validating this collected information.
If anything is not clear, or if you have other questions or concerns you would like to raise, please do not hesitate to get in touch.
Following on from the success of last year’s birdshot events, in 2014 BUS has decided to hold:
- two social events which will also incorporate talks about the research that BUS is helping to fund
- a fundraising clay pigeon shoot, and
- we will also be entering a team of walkers for the Fight for Sight Carrots Nightwalk
London social meetings and talks
The London social meetings and talks co-incide with bank holiday weekends. We hope this will make it easier to attend if you don’t live in the south east. The socials will provide an opportunity to socialise with other birdshotters and a chance to learn more about our birdshot uveitis research. The meetings will be held in the delightful environment of a historic Thames barge located in St Katherine’s Dock. As before, a buffet lunch and drink will be provided.
- Saturday 3rd May 2014 London social meeting with Professor Glen Jeffery from UCL and the Institute of Ophthalmology talking about the red light therapy research being carried out at Moorfields Eye Hospital.
- Saturday 23rd August 2014 with Dr Graham Wallace from Birmingham University talking about the development of the birdshot bio-resource centre and national birdshot database.
- 2nd birdshot shoot and auction on Wednesday 21st May 2014. The venue (Royal Berkshire Shooting Club) and cost of tickets will be identical to last year. If you are interested in taking part as an individual or entering as a team, (4 guns), please register your interest now, because places are already going fast.
- Carrot’s Night Walk – BUS will again be entering a team of walkers for the Fight for Sight Carrots Night walk. The date and details have yet to be confirmed, but it will be on a Friday night in September.
If you are interested in coming along to the socials/talks, or taking part in the fundraising events please do get in touch and make a note in your diaries. Email: info at birdshot.org.uk
Birdshot uveitis: current and emerging treatment options is the title of a recently published paper by Victor Menezo from Institut Catala de Retina, Barcelona, Spain; Department of Ophthalmology, Provincial Hospital Consortium Castellon, Castello, Spain and Simon R J Taylor Faculty of Medicine, Imperial College London, Hammersmith Hospital, London, UK; Royal Surrey County Hospital NHS Foundation Trust, Guildford
(Note: the whole paper can be downloaded as a pdf by following the link above and scrolling to the bottom of the abstract.)
This paper provides a comprehensive summary of current tests and treatments available for Birdshot Uveitis. It clearly makes the important point that, although central visual acuity can be preserved until late in the disease, it is not uncommon for patients to receive inadequate immunosuppressive treatment, leading to a poor long-term outcome in which peripheral retinal damage eventually leads to visual deterioration.
It also states that although “laboratory research continues to investigate the underlying mechanisms of disease, and clinical research is now being driven to improve the phenotyping and monitoring of this condition, it is becoming increasingly important to identify patients at risk of visual loss early so that they can be treated more aggressively with targeted therapies such as the newer biological agents.”
It states that “this approach requires the formation of collaborative groups, as the relative rarity of the condition makes it difficult for one center to accumulate enough patients for worthwhile studies. Nevertheless, results obtained with newer therapies, such as biological agents directed against particular cytokines or cell-surface receptors, demonstrate ever improving control of the inflammation in refractory cases, providing hope that the outlook for visual function in this condition can only improve.”
This paper certainly gives BUS hope. It is gratifying that it clearly endorses our belief about the best way forward, just at the point when we are getting collaborative work off the ground with the National Birdshot Research Network; and the development of the Birdshot bio-resource centre and Birdshot database.
Last week we were in touch with Alison Justus from MERSI concerning the video footage of the September 2013 Boston Birdshot Symposium which is going to be made available on-line. We are delighted to report that it should be ready early in the New Year and as soon as we have it, we will post the link on the BUS website.
In the meantime, the PDF below shows the posters that were distributed at the US Boston Birdshot conference. They describe the latest published Birdshot research coming out of MERSI.
The posters are:
- Assessment of TH1, TH2 and TH17 Cells in Birdshot Retinochoroidopathy: P Yang and C S Foster
- Combined therapy of cyclosporine A and mycophenolate mofetil for the treatment of birdshot retinochoridopathy: a 12 month follow-up RA Cervantes-Castaneda , LA Gozalez , M Cordero-Coma, T Yilmaz and CS Foster
- Regulatory T-Cells in Peripheral Blood of Patients with Birdshot Retinochoroidopathy: S S Siddique, L Amorese, L Almulki, A M Sueves. C S Foster
- Risk factors associated with relapse of Birdshot Retinochoroidopathy: A E Radwan R Oarujg, U Baheti, M Austin, CS Foster
- Infliximab treatment of patients with Birdshot Retinochoroidopathy:P Artornsombudh, O Gevorgyan, A Payal, SS Siddique, D C Foster
We really welcome receiving your stories as they can be very helpful especially for newly diagnosed Birdshotters to read. There is nothing like hearing first-hand about stories of treating Birdshot Uveitis successfully to give you hope and help make you realise that there can be life after a Birdshot diagnosis.
Recently I was in touch with Donna, (I met her at the Boston 2013 Birdshot conference) as I wanted her to share her experiences of cyclosporin followed by Remicade®, with a birdshotter from Puerto Rico who had recently written in to BUS and was wanting to communicate with other birdshotters before making her decision about her next treatment option.
We asked Donna if we could share her experience on the BUS website. The answer was yes, so this is her story.
“After my diagnosis four years ago here in Edmonton, Alberta, Canada, I was put on prednisone initially to get a jump on the inflammation. I learned of Dr. Foster in Boston, who apparently sees the most Birdshot patients, and my family insisted I go to see him. As per Dr. Foster’s protocol, I went on his cocktail of mycophenolate moefetil (CellCept®) and cyclosporine and weaned off the prednisone after 3 months. I was on this protocol for 15 months. My Birdshot stopped progressing but none of the symptoms reversed and I continued monthly injections in both eyes to control ongoing macular edema. I had many not-so-nice side effects from the cyclosporine that I was willing to put up with, thinking it was helping, but eventually it attacked my kidneys and I had to stop. I then found out that the amount and severity of the side effects probably meant the drug wasn’t really working for me all that time. Having said that, I met MANY patients at the recent International Birdshot Symposium in Boston who have had success with cyclosporine with NO side effects.
Dr. Foster then recommended I continue with the CellCept® and add Remicade®. While I waited for my insurance to approve the Remicade® my vision plummeted. Seven days after starting Remicade® I experienced a dramatic improvement in my vision! After 14 days I was driving again! My symptoms began reversing, the macular edema stopped (yeah, no more eye injections after two years!) and my vision continued to improve. I do have some permanent damage (from before the Remicade®) that doesn’t really bother me any more now that I am used to it and I am seeing better than I have in four years. And the only side effect I have experienced on Remicade® are some sinus issues that are easily controlled. Remicade® has been a miracle drug for me! Dr. Foster says the current thinking is a minimum of two and preferably three years symptom-free before weaning off all meds.
I don’t know what your health insurance is but it might be a major factor in your decision. cyclosporine and CellCept® are covered by my health care plan. While Remicade® is approved for use in many autoimmune conditions here in Canada, Health Canada has not yet approved it for use in eyes because there have not been studies done with adequate numbers here! It was a hassle getting approval from my husband’s company plan but they finally did approve it. The plan covers 90% of the cost but it is still extremely expensive. I would be inclined to say try the CellCept® and cyclosporine first because so many patients seem to have success with that. The Remicade® is a great back-up.”
Remicade® is given via an infusion in a hospital. It is rarely available in the UK unless other treatments have failed or are not tolerated. A special funding application has to be made. There is also the inconvenience of having to go every 4 or 6 weeks to have the infusion and this generally takes a couple of hours to do.
For further information about a recent research study on infliximab please see: http://www.ncbi.nlm.nih.gov/pubmed/23177362
If you would like to tell others your Birdshot story, please do write it down so we can publish it for our members to read.