The following link takes you to Joel’s blog which tells his personal Birdshot story which he has decided to share with other Birdshotters. Joel is from Texas, USA. Continue reading
Joel’s Birdshot story
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Category Archives: Our stories
Donna’s infliximab (Remicade®) experience
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.
Steve’s Birdshot Story
NB Magazine (the eye health and sight loss magazine for professionals,) which is published by the RNIB recently wrote to us to see if one of our members would be happy to contribute to their column called ‘Patient Perspective’ . This features the experiences of people with sight loss – covering a different eye condition each time, and describing what it’s like living with the condition. Continue reading
Lorraine’s Birdshot Story
Lorraine is the BUS fund-raiser and was diagnosed with Birdshot in September 2011. She was asked to tell her story to her local gym/club and they have published it on their web-site. Wonderful – not only does it help us raise the profile, and hopefully get some donations in for the Carrot Walk, but it also means that Birdshot stories are now speeding around the world. If anyone else can think of a way to get their stories into local or national media – please, please do.
Here is Lorraine
And here is the article Lorraine wrote for her local club:
I have been a member of the Park Club for over 5 years now and spend a huge amount of time in the adult bar and restaurant…I mean the gym!! The club has become such a big part of my family’s life over that period and never more so than now.
Last September I was diagnosed with an incurable eye disease called Birdshot Chorioretinopathy. This is a very rare and potentially blinding form of posterior uveitis which has a profound effect on your eyesight. It has changed my sight and my life in many ways over the last few months. I had pretty good vision up until June 2011 and then, within a few short months, I was unable to see well enough to cross the road safely on my own.
Birdshot is a very strange disease, it is quite mysterious and its progress and outcome vary enormously with every patient. It is often misdiagnosed and I feel really lucky that I live near an amazing hospital like Moorfields which has become my second home (after the Park Club!). The treatment for Birdshot is basically a lot of very toxic medication. I take more tablets now than I ever thought physically possible…I had to get over my tablet-taking phobia very quickly with this illness! I take very high doses of steroids and immunosuppressant drugs to control the inflammation in my eyes and to shut down my immune system. This, hopefully, will help to preserve my eyesight.
Since I started taking all these drugs I’ve seen some improvement in my vision and although I had a relapse in January I think I am making progress. This is something that unfortunately isn’t going to go away but will be part of my life forever. I’m trying to spend more time in the gym and doing classes because it’s really important to keep fit and strong when you are taking these kinds of drugs.
I’ve also become involved with The Birdshot Uveitis Society who have helped me a lot. In September I am taking part in the London Carrots Nightwalk for Fight For Sight. The aim of the walk is to raise money for a Birdshot Biobank to help fund research into this disease. I believe this is where the answers will lie. We need to find out why people get this eye condition and what can be done to treat it in a more effective way.
We are quite a rare group, us “Birdshotters” and our numbers are small. A Birdshot Biobank would really aid researchers and scientists interested in finding out more about the condition and would also help with devising better treatment options for sufferers.
Some fantastic friends from the Park Club are joining me on this walk and I think we will make a difference to the outcome for people like me. If you feel able to join us on our walk or to donate to this very personal cause, I would be so grateful! You can donate via my JustGiving page at http://www.justgiving.com/Lorraine-O-Mullane
Thanks for taking the time to read my essay!
Lorraine
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.
BUS moves to the next level
We are very excited to announce that BUS is growing and developing.
Until August 2011, BUS was part of the Uveitis Information Group (UIG), a charity working for people with all forms of uveitis. However, this arrangement became difficult to maintain because of rapid changes in the NHS (particularly in Scotland where uveitis services have developed at a faster pace), and changes in the charity sector.
UIG AND THE NEW SUN
Because of this, UIG will focus on Scotland and will evolve into becoming the Scottish Uveitis Network (SUN) – an organisation made up of NHS staff and patients. Phil Hibbert will be leading these developments in relation to patient support in Scotland and SUN will work with all forms of uveitis.
BUS DEVELOPMENTS
These developments give BUS the opportunity to re-focus and establish itself as a charity in its own right. There are a number of steps we will need to take but we have already fulfilled the first one of becoming a limited company and Birdshot charity. The formal registration should be complete by the end of the year.
BUS will work with all Birdshot across the UK, and expand its international links and expertise. It will continue to work in partnership with sister Birdshot organisations in France and the US.
We have been so very lucky to get help from two people who are involved with Birdshot and one person who is involved with PIC (Punctate Inner Choroidopathy – another rare white dot syndrome).
Peter Edney (far left), our treasurer, is a practising accountant, and is helping us become a registered company/charity. His wife, Janie, has Birdshot.
John Hall (left) has Birdshot and is a very successful business man. We are really lucky to benefit from his business knowledge and experience. He is helping us to plan for the future of BUS.
David Bethell is also part of the BUS team. As many of you may know David is our graphic artist and has been involved with BUS virtually from the start. He designed our fabulous logo and continues to come up with imaginative ideas for our posters and Birdshot Day leaflets. David also has Birdshot.
Dave Stead has PIC and runs a specialist PIC information and support website at: http://www.pic-world.net/. (PIC is a rare form of auto-immune posterior uveitis, which leads to punched out white spots at the back of the eye). Whilst still retaining its own identity, the PIC Society will be part of the new BUS charity. This will mean that in addition to providing specialist support for people with Birdshot, Dave will provide specialist information and support for people with PIC under the BUS umbrella.
Olivia’s Vision
In addition, a new charity for people with uveitis in England, Ireland and Wales has been set up by a mother of a child with uveitis. This new charity is called Olivia’s Vision and can be found at www.oliviasvision.org
NATIONAL ORGANISATIONS WORKING WITH UVEITIS
The three new organisations working with uveitis in the UK (BUS, Olivia’s Vision, SUN) will liaise to make sure that people are directed to the appropriate place for help.
THE FUTURE
At BUS, we have already been successful in raising the profile of Birdshot, attracting members with Birdshot and professionals working with Birdshot, and setting up a research network. The new BUS will give us greater strength to continue these activities. We also hope to develop a similar response for people with PIC.
We will keep you informed of any developments, but please be assured that for all of you who are members of BUS, whether you have Birdshot, are a family member or a professional working with Birdshot, the only changes you should notice is that we are better organised and have even more impact!
Neil’s story
An Australian Birdshot colleague of ours called Neil, recently wrote to us to tell us about his experimental approach to supplements. He has been trying to find a way of improving his vision through supplements and told us why he had decided to do this.
Over the years he has been on a number of the usual toxic treatments. Following a recent flare he was put on prednisolone and methotrexate. He reports that after some months on the methotrexate, a wavy line suggested his eyes were continuing to deteriorate and 15 mg/day of prednisolone was added for a couple of months after an ERG result showed rods were bad; cones were indicating nobody home!
Here is Neil’s story in his own words (much of what he says will ring bells with many of us).
“I noticed an article http://abstracts.iovs.org/cgi/content/abstract/43/12/2542 on increased retinal activity following a trial of a group of people taking lutein, nicotinamide (vitamin B group) and vitamin E, so thought I might as well try it for myself to see if it made any difference to my ERG tests, on the assumption that it would not have a negative effect.
To mimic the study, I took a bilberry and lutein tablet, a multi-B and vitamin E tablet. In addition I took folic acid in the Multi-B which I understand helps with tolerating Methotrexate.
The ERG in January and check up in March showed that the left eye reading level had returned to the level two years previously (couple of extra lines) and I am seeing a little more when I enter a darkened room.
Retinal inflammation has gone with prednisone and I can read with my left eye again.
So all I can say is the lutein, nicotinamide and vitamin E didn’t harm my outcome.
Here are the details of what I took.
The Health food shop found me NutriVital Mega B High Potency tabs one per day viz: http://www.nutrivital.com.au/product_detail.php?seq=23
I added Natures Way Vitamin E 500 iu – one per day although I didn’t take quite as reliably) and Bilberry 10,000 plus with lutein by Micro genics vision deficiency formula – one per day http://www.micro-genics.com.au/product/bilberry-10000-plus-vision.html
I also used Nutralife Bilberry 10,000 plus + lutein complex as the tablets were easier to take from a bottle rather than in foil.
Subsequently my GP recommended I increase the folic acid to 5mg/day to counter methotrexate effects, but the improvement was evident before then.
I was on 10 mg methotrexate once per week for a few months after complaining of loss of central clarity in left eye and an ERG test that showed basically non-detectable response to rods and cones with some small response to flashing light, but not for night vision. Some wavy lines at the edge of the computer screen worried me and a scan showed some retinal swelling in central left eye, so (reluctantly) I added 15 mg/day prednisone.
I tapered this back myself to 10 mg/day until just before the next ERG was due… then… Coming back from a fishing trip I noticed light poles bent half way up – 1m to the right through my left eye, so I boosted for a few days to 20mg/day prednisone to try to cheat on my ERG.
After verbally savaging my 20 year old son and snapping at my wife, I admitted defeat and reduced the dosage of steroids. ERG showed 50’s and 60’s for rods and cones this time and I felt night vision had returned to vaguely useful entering a dark room and possibly dusk driving. (evidently normal range is 250 to 600 so I hardly starred it, but it’s better measurably) Stayed on 12.5 mg/day prednisone for a couple of months and bent poles went away – slight horizontal bump in reading 12 point letters but left eye continues to improve and down to 10 mg/day prednisone.
Eye section scan showed rods and cones in left eye looking reasonably normal thickness in parts of scan which is interesting as I feel my peripheral vision has improved in that eye. Eye chart was about 2 lines better with pinhole as glare still a problem so I’m back to 2009 levels on the irrelevant eye test.
My choice of sunglasses has changed from dark grey or yellow to light grey polarised and I can almost say glare tolerance is improving as a consequence of this choice for driving.
Can’t say if prednisone or supplement has contributed to improvement but I continue to take both as the trial lasted 12 months and I am 7 or 8 months on from trying it.
Red wine, chocolate and thai curries are also a feature as is dark matured Australian Bundaberg Rum with Coca-Cola, so feel free to adopt any that appeal – with lots of fresh fruit.”
LoL Neil
Mike Brace on vision loss
The inspirational Mike Brace CBE, Chief Executive of VISION 2020 (UK) talks about losing sight in one of his eyes from a firework accident when he was 12, the subsequent development of uveitis in his remaining eye, and how he has dealt with this. He vividly describes life following his sudden loss of vision at such a young age. His talk at the Birdshot Day, was greeted with enormous laughter as he is such an amusing and inspirational speaker. He explains exactly what challenges he faced, and how he never let his loss of vision hold him back from achieving. (Apologies for having to shorten this to the maximum 20 mins. It was a hard choice to decide which jokes to cut.)
AIN 457 Study – my personal experience
Could 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
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!