AIN457 from Novartis
We would be interested to learn more about this new drug which is currently being used in a number of studies in the US and we understand that studies in the UK will commence soon. We searched for uveitis research on the Novartis site and came up with the following link http://www.clinicaltrials.gov/ct2/show/NCT00685399?term=novartis&cond=%22Uveitis%22&rank=8
We checked the MERSI website and found that a proof-of-concept study sponsored by Novartis, was carried out in MERSI in Boston US. The purpose of the study was to determine the safety of AIN457 in patients with uveitis and to investigate whether an antibody like AIN 457, which neutralizes the cytokine IL-17A, will safely reduce the intraocular inflammation associated with non-infectious uveitis. Data collected during Phase I of the trial is extremely promising and as a result, Novartis has amended the study protocol to allow more patients to enroll.
A multi-center, international placebo controlled study sponsored by Novartis to determine the difference in the rate of recurrent exacerbations in Behçet’s patients treated with AIN457 versus those given placebo or standard of care immunosuppressive therapy.
The study medication for this trial is identical to that of the Novartis AIN457 trial with the only difference being the delivery method. The preliminary proof of concept trial studying the AIN457 antibody yielded promising data and has resulted in new studies which target specific ocular inflammatory diseases such as Behçet’s.
It is possible that this drug may help people with Birdshot and we will keep a look out for updates about this.
Publicising the Birdshot Day and BUS
We have been advertising the Birdshot Day and our website in as many places as possible, as we want everyone who has birdshot, their families and friends and health care professionals with an interest in the condition, to have the opportunity to come to participate and learn.
Graphic Artist David Bethell has designed another superb poster specifically to advertise the day. Please contact us at Birdshot@live.co.uk if you would like a copy of the poster to display in the eye clinic (you will need to ensure you give it to the right person to get it displayed). If you prefer you can download the poster from the site and print copies. We have a choice of colour or black and white.
We need your help to make sure the Birdshot Day is widely publicised in the right places.
We now have links to the Birdshot Uveitis Society’s website on a growing number of national and international sites as well as sites such as Facebook, Wikipaedia, Rareshare, Birdshot lefora forum and a many more. If you have ideas about other places we should advertise our Birdshot Uveitis Society website and the Birdshot Day, we would be grateful for your suggestions.
Below are a number of links to sites where the Birdshot Uveitis Society is mentioned.
Many thanks. Annie
Article in Orphanet News April 21st about the Patient Day
RNIB – Rare Diseases and the Events listing
Unintended effects of Statins
Rea came across this piece of research, published in the BMJ last week, which highlights increased risk of liver/kidney damage and myopathy and cataracts from taking statins. The research highlights some of the possible side effects of taking higher doses of statins.
As a result of this, Doctors are being urged to choose the lowest possible dose when they prescribe cholesterol lowering statins.
If you currently take statins you may wish to review this with your GP and Ophthalmologist, discuss the benefits against the risks to find out if drug you are prescribed should be changed.
The link below takes you to the published paper.
Smoking
Recent research has shown that individuals who smoke have a 2.2 times higher odds than those who had never smoked of having ocular inflammation, with all anatomic subtypes of uveitis associated with a positive smoking history.
In the study, a positive smoking history had an odds ratio of 1.7 (P =.002) for anterior uveitis; 2.7 (P = .005) for intermediate uveitis; 3.2 (P = .014) for posterior uveitis; and 3.9 (P < .001) for panuveitis.
The odds ratio for panuveitis and cystoid macular edema (CME) was 8.0; for those without CME, it was 3.1, according to the study.
“A history of smoking is significantly associated with all anatomic subtypes of uveitis and infectious uveitis,” the study authors said.
“The association was greater in patients with intermediate uveitis and panuveitis with CME compared with those without CME. In view of the known risks of smoking, these findings, if replicated, would give an additional reason to recommend smoking cessation in patients with uveitis.”
The retrospective case-control medical record review looked at 564 patients who had ocular inflammation and 564 randomly selected eyeclinic subjects. All patients were seen at the Proctor Medical Group between 2002 and 2009.
The study employed a logistic regression analysis. Ocular inflammationwas the main outcome variable, and smoking was the main predictor variable variable, with adjustments for age, gender, race and median income.
So if you are a smoker and you have birdshot, you know what you should be trying to do! It’s obvious smoking can’t help.
Ophthalmology. 2010;117(3):585-590.
Vitamin B1
We came across an article about Vitamin B1 and how it might be helpful in treating common cause of blindness.
http://www.india-server.com/news/vitamin-b1-can-be-helpful-in-treating-7032.html
“According to a research team led by an Indian origin scientist, vitamin B1 can be effective in treating common cause of blindness. The scientists claimed that supplementation of a particular type of vitamin B1 known as benfotiamene can significantly treat uveitis, which causes blindness in human eyes. Uveitis is a malady that causes inflammation of the tissue located just below the outer surface of the eyeball. If the disease is not treated properly, it can cause blindness. › Continue reading
Ability Net
If you struggle with your computer because of your visual problems I definitely recommend you visit Ability Net and follow the links about My computer My way. › Continue reading
Cookery Books
I attended a patient conference for younger people with macular disease today and came away with two great cook books that I want to tell you about. I am sure anyone interested in self-help and healthy eating will enjoy them. › Continue reading
Steroid induced hump
Here is a question that a new member Vicky asked us to pose to see if anyone has any useful advice for her. This is what she says:-
“Do any of you suffer from a hump?
Is there anything I can do to help with this?
To anyone else I guess this would sound ridiculous – but I’m hoping you know what I mean.
I find it quite distressing that my face has changed shape and that I now have a hump on the back of my neck, I understand that this is a side effect of the steroid usage but I was wondering if there were any members who have the same thing and have any tips for helping with this?”
Both Rea and I see chiropractors in our efforts to stay straight, improve our posture and reduce aches and pains that these drugs seem to inflict upon us, but we’d be interested to know if members know of other things that can help alleviate this particular problem.
Thanks
Reasonable adjustment for VI at work?
Following on from Adrian’s article entitled “Coming out at Work” about the Disability at Work Act, we came across this piece of research being done by David Griffiths. He is looking for visually impaired people who are prepared to be interviewed over the telephone and are interested in helping out with his research on this topic. If you are, he can be emailed at:- d.griffith@btinternet.com. › Continue reading
Birdshot and Complementary Therapies
When faced with the news that you have been diagnosed with not only a rare eye disease but one where the prognosis is not good for the future, it is easy to see how you can feel as if your world has been turned upside down. In some ways it can be looked upon as losing control of what is going on in it.
After being given details of the various medications (and their side effects) which may or may not work, it is almost certain that your emotions and thoughts are going to change – positive one minute and negative the next. This in turn will have an affect on the physical body especially if one begins to feel helpless in this situation. › Continue reading
A sponsor of the Birdshot Day
