Trial drug AIN 457 – a patients view

A Patients view of the recent study into the treatment of posterior Uveitis with a trial drug – AIN457

In 2007 I was sent to Shrewsbury hospital by my optician after a routine examination for contact lenses. After several months of tests and examinations, I was given a diagnosis of BCR but the treatment I received at Shrewsbury was not perfect and the following year – 2008 – Professor Murray was kind enough to take me as a patient at the Birmingham Eye Centre. Under his excellent care, assisted by Dr Alastair Denniston, my Birdshot stabilised under a regime of medication involving 5mg prednisolone daily (later reducing to 2.5mg) and 1gm of Cellcept daily (later reducing to 500mg). This was matched by a regime of anti inflammatory diet, dietery supplements and daily meditation as well as plenty of fresh air and exercise. In this way, I was able to maintain ‘quiet’ eyes.

In the course of routine visits to Professor Murray’s clinic, I was given routine slit lamp examinations as well as blood tests and annually, ERG tests and more recently, I began to have regular OCT scans.

In spring 2010 I was invited to join a phase three study into the effects of a new drug, AIN457 produced by Novartis, as a treatment for posterior uveitis. This was a double blind trial involving four cohorts – three on varying doses of the study drug and one on placebo. In August the same year I began fortnightly injections of the trial medication and the following month I stopped taking Cellcept as well as beginning to taper off the steroids.

Research on the internet revealed that other trials using the same new medication where also being conducted on patients with RA, Behçet’s Disease, Ankolysing Spondelitis, Psoriasis and Crone’s Disease – a host of auto immune conditions. Indeed, one study had already led to a product name for the new drug, Secukinumab.

By November, I was able to stop prednislone completely while my eyes continued to be free of inflammation, presumably with the benefit of fortnightly injections of AIN457. This situation continued until the following March (2011) when without warning, the study came to a premature halt. I had agreed to take part in a second stage to go through for a further six months so I was disappointed that the new treatment was suddenly unavailable, particularly when I had apparently had such good results. The only explanation from Novartis was that the results of the first part had not been good enough to warrant continuing the study.

After taking advice from Professor Murray and Dr Denniston, I decided to continue without reverting to the previous regime and to carry on without any medication for the time being. Further checks in the following months (most recently in June) have shown no sign of new inflammation. I am next due for a check up in October but as far as I can tell all is well just now. I am waiting to see the full results of the study which I hope will be published soon.

 

Nick Bucknall.

One thought on “Trial drug AIN 457 – a patients view

  1. If possible could we know how Nick gets on in October? I hope all remains well and it is good to see different studies taking place.

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