AIN 457 Study – my personal experience

P1250053Could this be the answer?

From a personal perspective, Nick tells his story about his experience on the Phase 3 Novartis AIN457 Study

“I’m really happy to bring some good news. I’ve been taking part in the Study of a new treatment for the last 6 months and it seems to be working. I’ve been off all other meds for 2 months now without any sign of a flair-up and my doctors agree that the new treatment seems to be controlling the disease.

AIN457 is a new drug in the final stage of trials to treat a number of different inflammatory conditions. It has been created by the Swiss company Novartis and is a fully human antibody to Interleukin 17a – a messenger in the immune system which is thought to be responsible for a number of auto-immune conditions including Birdshot. Continue reading

People with Birdshot talk….

It’s a frustrating fact that diagnosis for Birdshot is not easy, even for the experts. That’s why it takes so many of us a long time before we eventually get told what is wrong with our eyes, and even then, sometimes we get told later on, that actually after all it’s not Birdshot, but something else which more than likely needs equally aggressive treatment. Dagmar of Birdshot Lefora website reminds us that we need to remember that:-

“There is NO single test/indicator/marker for birdshot, although everyone seems to think the HLA A29 positive is. It is not. Just one of many areas a good diagnostician will ponder. We all want an answer and the reality is, for some, there is not a definite yes or no as to their diagnosis.

Uveitis = inflammation of the uvea, something has caused that inflammation. Therefore, having uveitis indicates there is something else wrong; there are about 60 or so conditions that are identified as causing uveitis, and for a quite few, the diagnosis is ideopathic or cause unknown. Our ophthalmologists are just like a lawyer who is building a case, bit by bit, with each piece of evidence to draw a conclusion.”

Here are 3 short interviews  people with birdshot who attended the Birdshot Day back in September.   We will post some more next week.

Mrs Birdshot has had Birdshot for over thirty years. It took a long while for her to be diagnosed and over the years has received a number of different treatments, some more successful than others. Her’s is a positive story. She has maintained her vision and she doesn’t regard herself as ill and doesn’t want to be thought of as a patient. She wants to have a partnership approach to her treatment with her doctor.

Carole’s story is similar to Annie’s. She has been treated for a number of years and has maintained reasonable vision.

Lesley is a young woman who has been treated for her Birdshot for over 10 years. She’s had a tough time finding the right treatment for her Birdshot and her arthritis, but her current medication is controlling both and she couldn’t be happier.




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Hospitals failure to communicate with GP

Has anyone had the same problems as Real Ale?

Recently his consultant changed his immunosuppressant from Azathioprine to Cellcept (mycophenolate moefetil). He collected his prescription from the hospital pharmacy. This was fine until he nearly ran out and asked his GP for a renewal.

His GP refused to prescribe it (Cellcept) as he hadn’t received a letter from his consultant. His GP, through his surgery, asked him to ask the consultant for a letter explaining why he was now on Cellcept and the dosage. The consultant duly responded and confirmed that he was on 500mg of Cellcept twice a day. Except Real Ale wasn’t. He had been upped to 750mg twice a day… and so his doctor refused to renew the prescription until he had a letter confirming this… Real Ale suggested to his surgery that he could explain to the doctor why he was on this medication and how he should be monitored and what tests were needed. This offer was declined and Real Ale had to write once again to his consultant asking for all this to be made explicit.

In fact it was nearly four weeks before Real Ale was able to get his prescription for Cellcept sorted out. It seems he was a victim of the ‘Shared Care’ protocols which specify (or should) the respective roles of one’s own GP and the consultant in the management of a patient’s condition.

It seems to me that this might be a common problem. I had a battle with my own GP in the beginning, until my consultant very kindly rang him up and explained – the GP had said it was down to the consultant to get in touch with him when I suggested he phone the consultant up, not the other way around! This required phone calls and faxes from me to my consultant’s secretary before the necessary conversation took place.

Our  message to patients is be persistent, you are the only one who can sort the problem out even if you have to act as go between… And if your consultant has promised to write to your GP check that your GP has actually received it!

I'm new to BUS

Hello all

I’m new to this forum and don’t have Birdshot, rather I have Still’s – aka juvenile rheumatoid arthritis + uveitis. But I am very relieved to find this forum, and will post more elsewhere in more detail if anyone is interested, as I am happy to share my experience with long-term use of oral prednisolone. Continue reading

Coming out at work

This post has been written by Adrian,  a member of the Birdshot Uveitis Society.

Dear All,

I thought I’d write a post about the Disability Discrimination Act 1995 (DDA),  sharing  my own experience at work.

To gain protection under the DDA you must normally have a disability.  It is for you to provide the evidence that establishes that you have a disability.

The effect of a disability is not always obvious in the workplace. There are a number of conditions that can amount to a disability but aren’t always recognised, such as fibromyalgia, depression, dyslexia, etc.

Someone is defined as having a disability (for the purposes of the DDA) if they have “a physical or mental impairment which has a substantial and long term adverse effect on her/his ability to carry out normal day-to-day activities.” Continue reading

Rea's story – Birdshot troubles

Isn’t it interesting how, when life is absolutely perfect and you couldn’t want for anything more – along comes something that you definitely don’t want just so you can experience a bit of angst!

So, there I was, aged 51, back in 2005, in the perfect job (Director of Social Services) – the one I had spent my whole life dreaming about – and living an amazing life with my weeks being spent in Winchester, one of the most beautiful cities in the UK, and my weekends in London.

I had a little cottage in Hampshire with its back garden running straight down to the river – breakfasts spent communing with the ducks and days spent in my office in the castle, working with amazing Hampshire people and ensuring that we delivered the best possible social care to all those in need.

Back in my home town, London, for the weekend, I took advantage of the wonderful cultural life and saw a play at the Shakespeare globe, followed by a meal. Shortly after the meal, I started to feel very strange, aching bones, dizziness, pounding headache and a feeling that I might just be sick! So I made my excuses and went home, straight to bed. What a Saturday night – was woken halfway through the night with violent vomiting, a headache so bad I thought I was dying and at some stage, I passed out. Woke up several hours later with a huge bruise on my face and feeling very delicate. Spent Sunday in bed and went to work in Winchester on Monday, still feeling very fragile. Recovered by Wednesday. Continue reading

Annie's story

Birdshot

Its hard to think back to the time when I first began to have visual problems and when exactly I realised that something bizarre was going on with my eyes.

I remember struggling to drive along unlit up roads and thinking – well I can’t do that anymore, I must be getting old!

I remember floaters driving me mad but the optician told me I didn’t need to worry I didn’t have a detached retina and my macula looked fine.

I remember frequent changes of prescription and new glasses and still not being able to see properly.

I remember the horizon going grey fading into nothingness.

I remember struggling to fill in forms with faint grey boxes that I couldn’t see

Paperback’s whose print faded into the page

Difficulty in underground car parks, getting keys into the locks at night, finding light switches, deactivating alarms in poorly lit areas.
Continue reading