Yearly Archives: 2011

Does the NHS serve us well?  Who attends Croydon Hospital?

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The Guardian of 22nd July had an interesting article, authored by Polly Toynbee, on the state of our NHS. She provides a specific example, based on cataract surgery in Suffolk, of how criteria for treatment are tightening, and delays are being built into the system.  The concern is that this way of ‘rationing’ healthcare is by no means confined to Suffolk.

Some worrying quotes from the article:

“To qualify for an operation patients need to be so poor-sighted that they can only see at six meters what ordinary people can see at 18 meters: previously people qualified if they could see at six meters what others see at 10. This is such a big difference that the optometrist revealing the new order says it would have excluded 90% of those he had sent for cataract removal over recent months.”

“Growing use of referral management centres means GPs’ letters to consultants are sent via a third outfit where they are scrutinised, often not by doctors but by nurses, physiotherapists or administrators, and returned if they don’t meet ever tougher criteria. That keeps patients off published waiting lists.     The King’s Fund has done research that shows no evidence that  this expensive extra tier of bureaucracy saves any money.”

This really is a sorry state of affairs, particularly for people like us who have rare and fluctuating conditions, and need expert help to retain our visual acuity. For the whole article follow the link below.

http://www.guardian.co.uk/commentisfree/2011/jul/22/nhs-still-at-risk?INTCMP=SRCH

But, what about the NHS services we with Birdshot use?  Have we noticed a deterioration?

We at BUS are interested in receiving feed back from anyone who is experiencing problems in getting NHS services, or getting appointments, or getting appropriate medication, or getting appropriate monitoring and testing.  Please email us with your experiences.

We have a particular interest in people attending the Croydon University Hospital Eye clinic (it used to be called Mayday).  Over the last year or so we (Annie and Rea) have noticed a worrying deterioration in services from the eye clinic there.  It is particularly pertinent to us, as one of the world experts on Birdshot practices from Croydon.  We really don’t want say too much about our own experiences at this stage, as we are looking for feed-back from any of you who attend Croydon.

The reason for needing your feed-back is that we have already been to see the senior management at Croydon, to explain our concerns about the services.  This has led to an agreement that we will provide on-going feed-back from any of our members who attend Croydon and we will keep a check on whether things are improving or not.   If they are not, we plan to take further action, so your help is really, really needed.

We are very happy to do the same for any other hospital where there are real concerns (we need evidence to do this – your experiences are very powerful evidence) so get those emails in to us – we need to make sure that EVERYONE with Birdshot gets a proper NHS service!!!

 

T cell response to retinal proteins

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Various diseases can be diagnosed by testing for biomarkers, a particular substance in the blood or tissue (e.g. troponin to determine whether someone has had a recent heart attack). So far there are no specific biomarkers for determining whether a patient has non-infectious uveitis. Using a mouse model of autoimmune uveitis, Mattapallil et al. found T-cells activated against a particular protein in the retina (retinal arrestin). This provides support for the theory that autoimmune uveitis is caused by the body attacking the retina and may lead the way to developing a blood test for diagnosing this disease.

Uveitis-Associated Epitopes of Retinal Antigens Are Pathogenic in the Humanized Mouse Model of Uveitis and Identify Autoaggressive T Cells.  (Journal of immunology (Baltimore, Md. : 1950). 2011 Jul 15;PMID: 21765017)

URL – http://www.ncbi.nlm.nih.gov/pubmed/21765017?dopt=Citation

Drug side effects and interaction

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We know that drug interaction and side effects are a worry to a lot of our members. In our search to find information we came across a couple of useful sites. The first is a US based health site that includes clear patient information for both vitamins and supplements as well as medications.

http://www.nlm.nih.gov/medlineplus/druginformation.html

Following on from the post about alternative medications and whether peppermint might have an adverse effect when taking cyclosporine, we were very interested to see that it clearly states on this site that it does.

The second website is run by Mediguard. The interesting thing about this site is you can develop your own profile and list all the medications you currently take. You give a few bits of information about yourself like age, etc. and it will give you a risk rating and tell you which medications interact with other medications that you are taking. This is very handy for people with Birdshot who may find that for the first time in their lives they are on a range of medications. The service also will send you updates on new information that comes out about the drugs you are taking, safety notices etc. A recent email asked us to tell our friends and family about this useful service so we thought we would pass it on.

http://uk.mediguard.org/referral

Is low dose methotrexate an effective Birdshot treatment ?

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Methotrexate is a cancer drug that has been used since the 1950s. It acts by inhibiting the metabolism of folic acid. In low doses, methotrexate is a safe and well-tolerated drug in the treatment of certain autoimmune diseases.

A study in Holland (by Rothova A, Norel AO, Los LI, Berendschot TT) looked at the effectiveness of low-dose methotrexate treatment for Birdshot Chorioretinopathy and how well it prevented visual loss in Birdshot

The retrospective case series involved 76 patients with HLA-A29 positive BSCR. 46 of these patients were followed for 5 years, 18 for longer than 10 years.

The treatment regimens were divided into the three groups:

1) No systemic immunomodulatory treatment

2) Treatment with systemic corticosteroids

3) Treatments with methotrexate

The group of patients who had methotrexate treatment showed better visual outcomes than those patients on just corticosteroid-based treatment (visual outcomes remained unchanged). The untreated patients visual outcomes were worse.

(Retina 3 March  2011)

URL: http://www.ncbi.nlm.nih.gov/pubmed/21386763

Birdshot Chorioretinopathy Research Network

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We have finalised a date  for the inaugural Birdshot Research Network meeting, to be held in  Birmingham on Tuesday 18th October.  We have written to a few uveitis consultants, but it is possible that we may not have written to yours.  If you are keen for your consultant to be involved in the Birdshot Research Network you can ask them for us by printing off a copy of the letter that you  will find here  and giving it to them yourself.   We would love as many Birdshot specialists to be involved as possible, but unfortunately spaces at the meeting are quite limited, so they will need to get in touch with us  quickly to let us know of their interest.

Thanks

Annie and Rea

NB Unfortunately this post applies only to people in the UK.


BUS website – how effective is it?

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Using Google Analytics we took a look at the monthly figures showing the number of unique visitors (i.e. the people who log on who have never logged on before),  how many visits, the average length of visit and from what countries.

The map to the left shows all the places in the UK where people have visited from October 2009 (when we launched the website) until now (end of June 2011).    On average we are now  getting 700 visits a month from the UK.  Since October 2009 there have been 11,996 visits from here.

Below are a couple of charts that show how the traffic has increased over the period the website has been published.  The number of countries now visiting the site is over 50. Our main traffic comes from the UK, with the USA coming in second.  We have also analysed the other countries from which we receive visits – it is no surprise that we tend to have the highest number of visits from those countries where there is a large european or caucasian population as the HLA A29 antigen tends to predominate in this population.  All in all, we feel that the number of visits we get, combined with our growing membership base, and the number of requests we get for information shows that BUS is performing a really useful function.

 

We thought it might be interesting to show some of the other countries where people visit the BUS website (see below).    During this period, there have been 3,048 visits from the USA and 373 visits from Canada.   There are also maps and figures for  France, Germany, India, Australia, Belgium and Netherlands.

 

 

In Ireland the number of visits since the site was established is 111.

 

 

United States of America  3,193 visits since October 2009

In Canada 399 visits

In New Zealand there have been 89 Visits

 

 

 

 

In  Austalia 166 visits

In France there have been 190 visits.

 

 

 

 

 

 

 

In Belgium there have been 126 visits

 

 

 

 

 

 

 

In Holland 122 visits

 

 

 

 

 

 

In Sweden 88 Visits.

Nurse Claudia represents Birdshot

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Claudia Wilson-Barrett, Link Nurse at Moorfields Eye Hospital presented a poster about the Birdshot Day at the recent Vision 2020  conference.

Claudia reported:

“Attending the Vision 2020 UK 2011 conference was a good experience for me. Preparing the poster was a steep learning curve as I had little power point experience and I had never had the opportunity to design this sort of poster before.

The poster explained the way the Birdshot Day brought together patients, their families and professionals giving everyone the opportunity to learn from each other and exchange ideas. It was  a pleasure sharing the information on the poster with patients, medical professionals and individuals from the NGO’s that visited the conference.

It was good to know that there are others that share my vision and practice:  putting the patient at the centre of our care. It is most important that the patients are given the information needed to make an informed decision about their management and care.”

A detailed evaluation of the day that was  carried out after six months revealed that:

  • 97% of patients responding at six months said that they would come again next year
  • 100% of professionals would recommend this day to Birdshot patients
  • 96% of professionals would recommend this day to other health professionals
  • 88% of health professionals would come again next year

We are very grateful to Claudia for her support. If you are a patient at Moorfields, be sure to get to know Claudia and the other nurses there.  They are really useful, inspirational and helpful people to know – they are there to provide you with information about your treatment and they have vast knowledge and are truly patient focused.

 

 

Vitamin D – the Sunshine Vitamin

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Many of us know from personal experience how osteoporosis can affect one’s quality of life. The drugs commonly used for Birdshot Chorioretinopathy treatment can put you at risk.

Bone health is something that anyone who is on prednisolone for any length of time must discuss with their her/his GP. The risk to your bones from steroids increases with higher doses of steroids (prednisolone) for periods of three months or more. The problem is that when you are first prescribed steroids for Birdshot, you just do not know how long you are going to be on them as no one can be sure how hard the disease is going to be to treat.

The question is what do you do to prevent bone loss?

Vitamin D is a crucial ingredient in the process of absorbing calcium and potassium into the body. Sadly more than 50% of the normal UK population have insufficient levels of vitamin D and 16% have a severe deficiency. (Pearce and Cheetham 2010/Hypponen and Chris Powers 2007).

Vitamin D has a complex absorption pathway. It is produced in the skin by a photochemical reaction that is stimulated by sun rays (ultra violet light). The amount of sunlight required to obtain adequate vitamin D is approximately 20 minutes a day (Holick 2002) outside of peak sunshine levels. So the best way to produce vitamin D is to have unprotected sunshine exposure for about 20 minutes a day, exposing only less sensitive skin parts such as the arms and legs in the morning and afternoon/evening.

Skin pigmentation comes into play as well. If you have dark skin you require approximately six times more sunshine than people with fair skin. Also people with a history of caridovascular disease, obesity, history of cancer, malabsorbtion disease and renal disease have a higher risk of being vitamin D-deficient.

If like most people with Birdshot, you are on immuno-suppressants as well as steroids at some point in your treatment, you are likely to be following the instructions to cover up and use high-factor sun creams to avoid the skin-cancer risks. You are therefore more likely to have low vitamin D levels.

Only a relatively few foods contain substantial amounts of vitamin D. The best sources are oily fish and cod liver oil. Farmed fish may have less vitamin D than wild fish. Egg yolk, oliver and wild mushrooms contain small quantities but the amount in most vegetables is negligible.

You might like to look at this website if you are interested in checking nutritional information for food.

The recommended daily intake for vitamin D is 400 IU per day for an adult and unless we consume this recommended amount, we are all at risk of osteomalacia and even rickets.

If you don’t already take a calcium-vitamin D supplement, please ask your GP about it because you may need it, at least whilst on steroids. (You can have blood tests to determine if you are deficient or not, and tests to check on your calcium absorption.)

Important message to take home:

  • Calcium should not be taken at the same time as mycophenolate mofetil (Cellcept ®) as it may decrease the absorption of mycophenolate by your body and hence reduce the effectiveness of the it. You should take calcium supplements as many hours apart as possible to reduce this potential.
  • It is really important to discuss taking calcium and vitamin D with your GP because, for some people, excess vitamin D can cause problems – e.g. if you have sarcoidosis (which can also affect the eyes) excess vitamin D can make sarcoidosis worse.
  • Weight-bearing exercise does help to promote healthy bones; go to the gym; take the stairs as opposed to the lift; wear a ruck sack with a litre bottle of water in it while you do the house work; go swimming; take up belly dancing or whatever you fancy. Remember that exercise is also great for reducing inflammation, and Birdshot is an inflammatory disease.
  • Exercise will also help to prevent the likelihood of falls and consequent broken bones because your muscles will be stronger.

We cannot emphasise enough that any exercise is better than none!

 

 

Sirolimus – New approach, Old Drugs

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We read about a phase 2 trial on the Birdshot Lefora Forum. The trial is being conducted at Johns Hopkins University, USA with sirolimus, also known as rapamycin and Rapamune®. Sirolimus is an immunosuppressant that inhibits the response to interleukin-2 (IL-2), and therefore blocks activation of T- and B-cells. It has a similar immunosuppressive effect to tacrolimus, but tacrolimus inhibits the production of IL-2 (rather than inhibiting the response).

This seems like a promising trial and, depending on the results, sirolimus may well be yet another useful medication for people with Birdshot who do not respond so well to the ‘traditional’ medication regimen of prednisolone and mycophenolate mofetil.

The clinical trial information below was obtained from http://clinicaltrials.gov/ct2/show/NCT01280669

Phase 2 of the trial is looking at the safety and effectiveness of two different doses (440mcg/mcL and 880mcg/mcL) of sirolimus, administered intravitreally (injections inside the eye) in patients with uveitis.

The trial is examining whether these doses can be used to control inflammation in non-infectious uveitis, whilst avoiding the potential complications associated with systemic drugs (i.e. drugs that are administered orally, subcutaneously, intramuscularly, or intravenously and thus can affect the whole body). Therefore, if proven effective, it may offer a safer way of controlling inflammation.

It does seem that quite a lot of work is now being undertaken around a range of non-systemic solutions – we have already reported on Retisert® and Ozurdex® – and non-systemic therapy may well be a safer way forward.

Birdshot Patients’ experience

It is early days but this is the latest news on the novel sirolimus treatments that we have heard from 2 people who have been on this particular trial.

” I was in the first sirolimus clinical trial at Hopkins and I’m waiting for the second series to begin. It has been approximately 6 months that I have not received injections and I’ve only had a couple of flare-ups. I can not tolerate steroids and Cellcept®, LX211 was ok, but taking 12 pills a day was not something I liked to do. The shots are my choice, one in each eye every other month. There will be a new sirolimus trial beginning any day now. I recommend it.” February 2011

Here is another person’s positive experience. This time on Phase 2.

“It has now been 5 months and I think I am doing great! I am going thru a battery of tests next month, but I am hopeful I will receive good results. What I do know is I am off Cellcept® and Neoral®since November, and prednisone has been reduced from 60mg to 8. I no longer have floaters, flies or other types of bugs and the glare has greatly improved. So much in fact I can drive at night under certain conditions. Johns Hopkins is starting Phase 2 and 3 at the same time and they are having great results with more than one disease. I think it is wise to learn more about this trial.

I believe 200 hospitals will also be doing this trial very soon. Sirolimus is the drug that is injected. So far so good. The only side effect I have had so far is loss of hair, but it is slowing down on the amount of hair lost.” June 2011

A bit more about Sirolimus

Sirolimus (also known as rapamycin) is an old drug. It was approved by the FDA in 1999. It was originally developed as an antifungal agent. However, this use was abandoned when it was discovered to have potent immunosuppressive and antiproliferative properties. It has since been shown to prolong the life of mice and might also be useful in the treatment of certain cancers.

What’s of interest for us?

 

  • Compared to calcineurin inhibitors (such as ciclosporin, tacrolimus, azathioprine), it is less likely to cause kidney damage.
  • It is available in generic versions so it is not prohibitively expensive.
  • It has been used for some time for other conditions (not for uveitis) so its side effects are generally known.
  • There should be no systemic side effects as it is being injected invitreally.

We look forward to hearing the full results of the study once it is completed. If it is being rolled out across 200 hospitals it is possible that some of these hospitals could be in the UK.

 

 

Uveitis Treatment in the US

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We came across an article, published in Medpage (an on-line source for latest medical news), which was published in October 2010.  It highlighted the fact that uveitis treatment in the US falls short of recommendations.   It is based on a paper presented to the American Academy of Ophthalmology by Nguyen Q, et al and this paper can be found at:
“A cross-sectional study of the current treatment patterns in noninfectious uveitis among specialists in the United States” AAO 2010; Abstract PA037.

The study was based on the responses from a number of consultants in the US.  The response from these consultants showed that most ophthalmologists do not rely on evidence-based treatment guidelines for uveitis and a survey showed that their practice patterns often deviated substantially from the guideline recommendations.

It also showed that steroids were used more intensively and immunosuppressants less intensively than recommendations and guidelines called for.

Also, 75% of the respondents said they either did not use or or were unaware of guidelines issued by two expert groups in 2000 and 2005.

The reason for the guidelines is because of the side effects of steroids and the knowledge that has been gained to date of what works on uveitis (we with Birdshot need immunosuppressants to try and get us into remission – steroids only control the inflammation and do not play a part in retraining our immune systems).   The guidelines were also introduced because it had been noted that people on long term steroids doubled their risk of cardio vascular disease (heart attacks).

The full article can be found at:

http://www.medpagetoday.com/MeetingCoverage/AAO/22904

Obviously, what we are concerned about is what is happening in the UK!  So, below is a list of points to think about.

Points to note

  • Most of the treatment in the US was with steroids at far higher doses and for a far longer duration than recommended in the guidelines – we do not want you to be needlessly worried.

However,

  • Although this study relates to the US, it may equally apply to the UK.
  • There are no guidelines produced in England  and Wales for our specialists to follow although Scotland is in the process of producing their own guidelines via their own clinical network
  • If you have been on high doses of steroids for more than three months and not been offered other immuno-suppressant type drugs you should  ask your consultant about why this is and seek another opinion if you are not satisfied with their answers to your questions.