Make sure your GP and your consultant communicate!

At BUS, we hear a lot of stories about the difficulties patients with Birdshot have in getting the right medication prescription from their GP.  Many of us with Birdshot have complicated medication regimes – the doses tend to change if we are in flare up or remission, and the actual type of medication may change quite frequently, if we are not responding to our current medication regimes. The other issue we face is that many of the medications we use come in branded and generic forms. So, for example, for those of us on cellcept, this now comes generically and many of us are now using a different brand, (for example Myfenax,) rather than Cellcept, although they are both mycophenolate mofetil. A GP may be keen to issue us with the generic form of our medication, as it is often cheaper and often just as effective. However for some types of immunosuppressants, the generic form is different and has a different effect. Your consultant and possibly your pharmacist will know this, but your GP may well not know.

Communications between the consultant and the GP is never very speedy and often we are faced with having to tell our GP ourselves that the medication regime has changed. This leaves the GP in a difficult position, as the medication regimes are quite toxic, often expensive and the GP is not an expert on immunosuppressants, although should have much more knowledge on steroids. But, do remember that the GP takes responsibility for not over-medicating us and for giving us the appropriate medication; and when we get a prescription from the GP, our medication costs (for those of us using NHS medications) come out of the GPs budget (or the budget of your local Primary Care Trust), and not the hospital. It is really, really important to make sure that you get your consultant and GP to communicate well to avoid any difficulties. One way of doing this is asking your consultant to give you a formal note that you can take to your GP which specifically states any changes in medication, the dosages and whether they need to be branded or the generic forms will do. Another way is by making sure you see the same GP each time and build a relationship with him or her.   And, of course, it is really important that we understand the medication regimes ourselves and the implications of them, so we can help guide our GP.

Just to illustrate how difficult it can be, we are sharing with you a couple of stories from our members (if anybody else has similar stories or stories about their difficulties, do let us know):

Real Ale’s story:

“Having had Neoral (Ciclosporine) added to his Cellcept, because of a flare up after his cataract operation, Real Ale went to his GP for a repeat prescription of the drug. In his efforts to save money the GP prescribed the generic form of Ciclosporine, not realising that could cause a problem. Fortunately the friendly, sharp eyed pharmacist rang Real Ale and queried whether it should be the generic form, pointing out that Ciclosporine was one of those rare drugs that once you have started with a particular brand, you should always continue with the same brand, unless you are deliberately switched. This meant that Real Ale had to go back to the Hospital pharmacy to confirm this was indeed correct. Different brands of ciclosporin have different rates of absorption of the active ingredient which is one reason for taking the drug at specific times. Real Ale’s pharmacist told him to put this advice in writing to his GP and requested a copy was sent to the pharmacy for future reference.

The second story concerns another patient with a similar issue about lack of communications. This time the dose of ciclosporin was being reduced but the GP was not informed and continued to prescribe the wrong strength. Ciclosporin capsules are not something you can break in half to take so this meant a trip back to the hospital to collect the repeat prescription as the GP refused to prescribe it, in the absence of notification from the consultant.

These stories highlight how difficult it can be to have a rare disease that fluctuates and is treated with toxic and expensive medication that is often outside of the experience of the GP. Hence the need to keep the GP properly informed, and to help guide the GP. We are also copying an article below about the pressure placed on GPs to the costs of medications they prescribe (hence the need for us to keep our GPs informed about our rare disease, its fluctuating nature and our need for different medication regimes at different times):

‘GPs are being banned from prescribing high-cost drugs approved by NICE as NHS managers seek drastic savings on prescribing budgets’.

This story was in this week’s Pulse (the professional journal for GPS). It’s about the cuts that certain PCTs are making by creating a banned drugs list to save money. It includes enteric coated prednisolone. What is really important to remember is that we have a RARE DISEASE which SHOULD fall outside of the scope of NICE (NICE is the National Institute of Clinical Excellence and decides on what medications can be used on the NHS) – for those of us with rare diseases, we SHOULD get more flexibility than the NICE guidelines – yet another reason for ensuring your consultant communicates well with your GP and that you build up very, very strong relationships with your GP, your consultant and your pharmacist. Do let us know if any of you are having problems – the more evidence we have, the more able we are to approach the ‘authorities’ such as NICE and the organisation that deals with rare diseases – AGNSS (the Advisory Group for National Specialised Services).

Rea and Annie


Nutrition and Acupuncture

Ocular Inflammatory Disease – Nutrition & Acupuncture

A lot of our members believe that it is worth eating an anti-inflammatory diet in the hope  that it might improve the inflammation found in their eyes. Rea discovered this presentation (above) some months ago, and I decided to give George Mandler a call the other day, to find out a little more.

George Mandler is a nutrition specialist, who got interested in uveitis because he had a number of patients with the condition. This is the slide presentation that he used at a support group meeting at the well-known  MERSI Ocular Immunology and Uveitis Foundation.

For those of you  who are interested we thought we would like to share this presentation with you.  It gives you a number of pointers and leads.

Mr Mandler said that there is conclusive research that shows real benefit for patients with rheumatoid arthritis who follow an anti-inflammatory diet. He also said that acupuncture can definitely reduce pressure in the eyes.

This of course is pretty easy to test, so if any of you are suffering from eye pressure, you might like to see if acupuncture can help you, as well as the usual eye drops.

“I tried acupuncture myself a few years back when I wasn’t being treated. The problem I found was finding a well qualified acupuncture close to where I live.  The man I saw did not think that acupuncture would help my eyes much. But then I didn’t have  an eye pressure problem. I would imagine, that even if you have a good acupuncturist and it does work, you will need to have regular sessions, presumably for ever.” Annie

BUS would never, ever advise you to stop medication – nor would we ever advise you that acupuncture is a ‘cure’, but we do know that there is a lot of evidence around that acupuncture is beneficial – but we do advise you to always discuss any alternative and complementary treatments you seek with your consultant, just in case there are any contra-indications. Having said that, there are a number of complementary and alternative methods that people have tested out and work for those individuals. You will remember we posted about saffron recently. Again, there is evidence to suggest that saffron does help your vision. It is well worth viewing the information attached – the more knowledge you have, the better equipped you are to be in control of your Birdshot, rather than letting it control you!

Annie and Rea

Mike Brace & Phil Hibbert 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.)

Below is the Audioboo link to Phil Hibbert’s talk about his personal uveitis journey which led to him setting up the Uveitis Information Group. Phil’s uveitis onset was sudden. He was a practising dentist prior to developing uveitis, but as you will hear, it didn’t stop him from doing the things he wanted to do. The second part of Phil’s talk about setting up the Uveitis Information Group, will be featured in a subsequent post.

Birdshot Day in Paris


We want to alert any one with Birdshot who lives in France that there is a Birdshot Day in Paris on the 26th March 2011. If you want to find out more about it, you need to visit the website and/or email them for more details. We know that this is an annual day and that it is part of a Birdshot research intitiative. We saw it mentioned on the inflamoeil website and also on a new site started by Sylvain Mignon. He is an artist with Birdshot, who has set up a Foundation in France with the objective of raising money for new Research into Birdshot, being undertaken in France.

Answers to some questions about Birdshot

We had so many questions asked at the Birdshot Day. It was a shame there was not more time for them all. These are just a sample.

What is happening with the drug LX211?

Are Retisert implants effective for Birdshot?

Is PDT treatment useful for Birdshot?

Should I be getting treatment?

Does Age at diagnosis affect your prognosis?

Can Birdshot be inherited?

How likely am I to get cancer?

How can I donate my eyes to Birdshot research?

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.


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!


We Promised to Re-Issue the Article on Saffron – here it is:

Saffron Improves Vision In AMD Patients

We read about this in the latest Vision Newsletter March 2010. It is interesting to see that some serious research is being done into the affect of Saffron on AMD.  A couple of our members have suggested that Saffron appears to have helped them but we had no idea that scientific research was being done.

A clinical trial has found that saffron, the famous Indian spice, can improve vision in patients with AMD, according to new reports. The trials were conducted by Silvia Bisti of the University of Sydney. The trial participants showed significant vision improvements after taking a saffron pill for three months, she said. “Measurements using objective eye sight tests showed patient’s vision improved after taking the saffron pill. When they were tested with traditional eye charts, a number of patients could read one or two lines smaller than before, while others reported they could read newspapers and books again.” The trial was double blind and randomly controlled, involving 25 subjects over six months. Half the group were given a saffron pill for the first three months followed by a placebo, while the other half were given the pills in the reverse order. “All patients experienced improvements in their vision while taking the saffron pill,” Dr Bisti said. “But when they stopped taking the pill the effect quickly disappeared”