Introduction
These birdshot stories are personal views presented by individual contributors. They do not necessarily reflect official Birdshot Uveitis Society recommendations and are not intended as such.
The stories are presented as a valuable resource of personal experiences from living with birdshot.
Readers should note that the contributions here are several years old. Since they were written, more ways of treating birdshot have become available, including the use of biologic medicines and intravitreal steroid implants.
Joel’s birdshot story
Posted on June 13, 2014 by Annie
The following link takes you to Joel’s blog which tells his personal birdshot story that he has decided to share with other birdshotters. Joel is from Texas, USA.
http://joelschwitzer.blogspot.co.uk/
Joel intends to update the blog from time to time, reporting on his personal progress.
Donna’s infliximab (Remicade®) experience
Posted on December 23, 2013 by Annie
I contacted Donna (I met her at the Boston 2013 Birdshot Symposium) as I wanted her to share her experiences of cyclosporine followed by Remicade® with a birdshotter from Puerto Rico who had recently written to BUS and who 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 mofetil (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-effects 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 available in the UK once other treatments have failed or are not tolerated. A special funding application may have to be made. There is also the inconvenience of having to go every four to six weeks to a clinic to have the infusion which 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
Steve’s birdshot story
Posted on January 4, 2013 by Annie
NB Magazine, the now-discontinued eye health and sight loss magazine for professionals published by the UK’s RNIB, wrote to BUS 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 – describing what it’s like living with the condition.
We are very grateful to Steve, a member of BUS, who volunteered to write about his experience with birdshot uveitis. It’s interesting to read, as Steve is being treated successfully with steroids and has not been so adversely affected by the expected side-effects. He remains very positive and the article clearly illustrates that the ’steroid experience’ can vary considerably from individual to individual. You can read his story on the PDF link Living with Birdshot. The article was first published in NB magazine in December 2012.
Lorraine’s birdshot story
Posted on April 20, 2012 by Reanna7
Lorraine was the BUS fundraiser and was diagnosed with birdshot in September 2011. She was asked to tell her story to her local gym club and they published it on their website.
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.
Thanks for taking the time to read my essay!
Lorraine
Trial drug AIN457 – a patient’s view
Posted on September 13, 2011 by Annie
A patient’s 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 birdshot chorioretinopathy 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 Mr 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, dietary 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 slit lamp examinations as well as blood tests and annual 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 were also being conducted on patients with rheumatoid arthritis, Behçet’s disease, ankylosing spondylitis, psoriasis and Crohn’s disease – a host of autoimmune conditions. Indeed, one study had already led to a generic name for the new drug: secukinumab.
By November, I was able to stop prednisolone 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 Mr 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.
Neil’s story
Posted on May 18, 2011 by Annie
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 treatments. Following a recent flare he was put on prednisone 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 prednisone 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 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.
I added Nature’s Way Vitamin E 500IU – one per day, although I didn’t take it quite as reliably) and bilberry 10,000 plus with lutein by Micro-genics vision deficiency formula – one per day.
I also used Nutralife Bilberry 10,000 + 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 the 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 I’m 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 is still a problem, so I’m back to 2009 levels on the relevant 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 supplements have contributed to improvement but I continue to take both as the trial lasted 12 months and I am 7 or 8 months in 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
THOUGHTS ON “NEIL’S STORY”
- Paul Bowskill on September 22, 2011 at 10:29 pm said:
Hi Neil, I love that you are totally in control of your medication! You have also reminded me that at a time when my symptoms were at their worst, I was trying the ACE vitamins and eating/drinking anything that said ‘antioxidant’ on it – with surprising results. I think I stopped taking the supplements in the end because it all calmed down and I hate popping zillions of pills daily.
- kerbsne on September 26, 2011 at 7:36 am said:
Thanks Paul. Self-medication was partially initiated by surgeon being away on sabbatical in remote area of planet, but I felt that I could read with the eye before and if no-one could see any inflammation, then I should be able to again.
I kept the dosage up and flagged a concern to my doctor after I noticed my right eye reading prescription improved my TV watching distance vision.
He suggested new glasses and an eye check came up with a plus 2 dioptre contact lens for distance vision. This may not concern most of us, but I had a cataract lens replacement which was set at distance vision and was now too long-sighted for focussing.
I then quizzed my doctor as to how a set lens could change by 2 dioptres.
He agreed it was probably inflammation and I should continue with the added prednisone if I could tolerate it.
My impression of improving clarity in peripheral vision continued and spread from left to right and has now cleared up sufficiently for reading with the left eye once again. I get some improvement with the contact lens for distance vision, but it is lessening.
I am now tapering back prednisone to 7.5mg/day to months end, then I will try 5 mg/day for a month and monitor my vision.
As I said recently on the BSRC site – the only time slit lamp examinations and eye charts picked up inflammation was my first flare – which lobbed a lesion on my left optic nerve attachment point and blinded me centrally.
All other flares and aberrations have been detected by my subjective accounts of vision changes and confirmed by ERG or retinal section scans.
If you have a concern, you will be the first to pick it up and you need to ask for a response from your physician.
All the best
Neil
- leigh miller on July 12, 2012 at 8:02 am said:
I love these replies ~ they give me hope.
- kerbsne on August 24, 2012 at 8:21 am said:
Latest ERG shows continuing modest improvement.
- Annie on August 24, 2012 at 10:21 am said:
This is such good news. Annie
Hospital’s failure to communicate with GP
Posted on September 27, 2010 by Annie
Has anyone had the same problems as Real Ale?
Recently his consultant changed his immunosuppressant from azathioprine to CellCept (mycophenolate mofetil). 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 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, not the other way round! 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 the letter!
THOUGHTS ON “HOSPITAL’S FAILURE TO COMMUNICATE WITH GP”
- Carole Ball on October 1, 2010 at 6:47 pm said:
My GP won’t prescribe me CellCept even with a letter from the hospital, although he does very kindly give me a monthly blood test for which I cannot have a printed copy for my consultant unless I pay for it!! Every time I visit Moorfields they have to give me enough CellCept to last me until my next appointment which, if I am not seen for 3 months, is an awful lot of tablets (I am on 1g twice a day). It always seems to be about money!
- Mrs Birdshot on October 3, 2010 at 12:02 pm said:
Perhaps as with many things ‘NHS’, you simply have to be lucky – when I first started taking CellCept many years ago, I chatted with my GP who readily agreed to provide repeat prescriptions, conduct blood tests etc.
They have done so ever since, and I can pop in before visiting Moorfields to get a photocopy of my blood results (no charge).
Small glitch when I had a letter from the surgery to say they proposed changing my enteric coated prednisolone to the other (yucky tasting) type. This was to save money. However, a letter from Moorfields backed my request that this change should not happen and I now continue with the EC pred.
The GP worked with me to arrange local bone scans to save me time visiting St Thomas’ and sent the results on to Moorfields.
I suppose what I’m trying to say is that between Moorfields and my GP practice, I feel extremely well looked after.
Even my local pharmacist works wonders when trying to source CellCept… not an easy task these days!
Having attended the BUS conference in 2010, the cosy bubble I existed in has somewhat burst; I have no horror story to tell, no difficulties to speak of and was shocked to hear of the daily challenges, both medical and practical, that so many others experience in their journey with birdshot.
I just wanted to share my positive experience of working in partnership with medical professionals. I do not consider, and do not give ‘permission’ to anyone to call me a patient – I am not ill, I live with a condition and view myself and the professionals as equal partners in managing its progress. Seeing myself as a partner gives me the confidence to negotiate with people who I might otherwise have felt daunted by.
- Claudia on October 4, 2010 at 6:46 pm said:
Being a partner in the care of oneself is very important. It allows for compliance and the outcome is always better. You can call it shared care.
One of the statements that I don’t like is when someone with birdshot is called birdshot patient. To me this is saying that the person looks like a birdshot and is defined and controlled by the disease. The statement should be ‘person living with birdshot chorioretinopathy’.
- Mag Pie on October 4, 2010 at 7:36 pm said:
I have had numerous problems – mainly having to do with dosage of a med being changed but this not being communicated to the GP in time for the repeat script. I now make it a point to get involved myself. Also I now only deal with one GP at my surgery who trusts what I tell him, and I call him straight after I see the consultant. What it all comes down to, in my case, is the inefficiency of a system where everyone communicates by post and as noted above, where everyone likes to defer responsibility to someone else. I’ve had a letter take up to two months and in one case, it was simply never written.
- Paul Bowskill on September 22, 2011 at 10:43 pm said:
I’ve changed GP once since being diagnosed with birdshot. The first surgery would write prescriptions willy nilly and do the blood tests they were advised to do in the letter from my consultant. Great when you are the one wanting the stuff without the hassle. But they really did only do what the consultant’s letter told them to do. My new surgery is much more proactive and seems to take an interest in the drugs I am on and making sure I’m getting all the right tests done in a timely manner – checking up on a regular basis to go in for a chat about the medication. It’s more ‘hassle’ for me (who likes a simple life) but I feel properly looked after. They also went out of their way to get the CellCept on local prescription for me – as this health authority has it ‘flagged’ as something only a hospital can prescribe. Wasn’t like that with the old one.
Dagmar Cole on a birdshot diagnosis
Posted on December 23, 2010
It’s a frustrating fact that diagnosis of 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. Even then, sometimes we are told later that, actually, after all, it’s not birdshot, but something else, which more than likely needs equally intensive treatment. Dagmar of the original but now discontinued Lefora US birdshot uveitis forum reminds us that we need to remember:
‘There is NO single test/indicator/marker for birdshot, although everyone seems to think the HLA-A29 positive test is. It is not. It’s 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 equals 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 a few, the diagnosis is idiopathic 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.’
What acceptance is…and is not
Dagmar Cole
Posted on the (now discontinued) Lefora US birdshot uveitis forum, September 28, 2012
I have written a great deal previously about the various stages of grief that one goes through when getting handed the diagnosis of birdshot:
- denial
- anger
- bargaining
- depression
- acceptance
A great deal of focus is on the denial stage, since you have to get your head out the sand and get your @ss to the physician and do something before losing all your sight and there is no time for dawdling. We’ve all been angry and p*ssed off about why – we don’t get a reason: it just is. So then we start bargaining…with God, if you believe in him or her, or fate, or nature, or any other notions you have about what may improve your lot in life. Then there is the depression that hits when all that bargaining, and promising, and strict macrobiotic vegan organic diet is not working. Add any dose of prednisone, and you can be so explosive you need to register with the local police department as a lethal weapon.
At the end of all this cycling up and down, back and forth, round and round, after weeks and years, comes acceptance.
So exactly what is acceptance?
I will tell you what it is NOT.
It is not sitting on your rear, with some beatific serene smile on your face, singing ‘Que sera, sera’, waiting for the lights to go out.
No, no, no.
It’s more like this: it’s like being stuck in a really rotten marriage. The fact is, you cannot get out of the d*mn thing: you cannot control your partner or his/her actions. And there you are…stuck in the middle of this swirling chaos that is beyond your reach. Acceptance is understanding the wolf is AT THE DOOR…he’s on one side, you are on the other. It does not mean you lie down and wait to be consumed. Oh, no, no, no: acceptance is using your wits and your wiles to outsmart and outfox that slathering wolf. You know and accept he’s on the other side but you control the things you can control: you get out of debt, you save money, you build a support network and community, you pay attention to your health.
THAT is acceptance.
Often people say to me: what a horrible concept. You expect me to join a church or a community knowing I’m going to use them to help me in the future?
Yes, that’s exactly what I’m telling you. It’s called: welcome to the human race. If a person is lucky, they will get old, and old people often get sick and need help. So what were you planning on doing when that time of your life rolls around? I know many old people who cannot drive due to macular degeneration or strokes or broken hips that did not heal correctly. Birdshot just forces you to face your future, but you need to be a Prepper and prepare now, rather than having this hit you later. It’s the concept of paying forward. You should not just sit around sucking people dry: you should be contributing and helping others in your community any way you can now, so others will be there when you need help. I promise you, the world does not end, stones will not rain down upon you, the ground does not open up and swallow you whole if you ask for help. And please, learn to be as gracious receiving as giving.
Birdshot is a bad thing, and I always say, many things are worse. Want to bargain? Think about Christopher Reeve stuck in a wheelchair. I saw an interview by him before he died. He said the thing he missed was never having privacy – he could not be left alone for one minute. How about a stroke? Watch ‘The Diving Bell and the Butterfly’. I had a good friend whose mother had amyotrophic lateral sclerosis (ALS) and I would not wish that on my worst enemy. Folks, there are about a zillion worse things that can happen to you than having birdshot. At the end of the day, it’s a nuisance. Gotta take your meds, gotta see the doctors, gotta get your ERG and fluoresceins, gotta make sure the LED lights are on their timers. And yes, given all that, you may not go into remission, but sight is worth fighting for. It’s just a few more tasks you need to take care of in your daily routine. And if the worst happens, hopefully you have taken the time to prepare for that moment that we all pray never comes. But…if you have prepared, it’s bad but not a catastrophe. If the worst never happens, then you just put yourself in a position to reduce your stress and be happier with life.
Hope this clarifies what the end goal is here. D.