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Campaign to overturn NHS England’s decision regarding Humira and Remicade

RNIB is running a campaign to overturn NHS England’s recent decision not to approve Humira and Remicade for the treatment of severe refractory uveitis. No doubt you know that this is a rare condition and that this decision will affect approximately 100 children and 200 adults in England per annum.

This decision will affect people with hard to treat Birdshot Uveitis who fail on the more usual treatments,  either because they do not work, stop working or cause unacceptable side effects.

RNIB is now calling on its supporters to take our e-action and send a letter to NHS England urging them to reverse their decision.  Birdshot Uveitis Society would urge all members, their families and friends to support this petition.   The e-action and template letter is simple and quick to use and can be accessed at:

http://e-activist.com/ea-action/action?ea.client.id=1670&ea.campaign.id=4107ili

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Interactions – a new BUS Q & A page

We are frequently asked about possible medicines interactions, particularly between prescribed immunosuppressants and complementary medicines such as dietary supplements or herbal remedies. The truth is that there is often no easy answer to many medicines interactions questions.

So, we decided to develop a new Q & A page to help you understand the subject of medicines interactions. We hope you will it find helpful, thought-provoking and enlightening.

The Q & As explain some of the complexities of medicines interactions. We hope that they will guide you in your searches and checking processes for the interactions information you need before you consider buying other medicines or supplements to add to the medication you are already taking.
Follow this link to browse the Q and A’s.

The Q & A content was created by one of our members. It has been reviewed by healthcare professionals and by members of the BUS standing advisory committee.

BUS would like to thank all those involved in preparing and checking this information.

April 2015

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Specialist commissioning process update

Birdshot Uveitis Society members based in England may be aware we have been awaiting the results of the Specialist Commissioning process which has been going on over the last year. This is the process whereby government will decide which drugs are available for different rare conditions depending on the evidence that is available which shows that the drugs are effective.

We had been led to believe that the outcomes would be announced in December.  The recent news is that the decision making process had been delayed as a result of the threat of legal action by a patient group, (nothing to do with eyes or ophthalmology, but some other rare condition), who felt that the process was unfair.

In the meantime we’d be interested to hear from any patients with Birdshot Uveitis in the UK who have been turned down for treatment with either Humira or Infliximab and whose consultants are struggling to control the inflammation in their eyes with the more usual treatments. It would be interesting to get some idea about the numbers involved and to see what can be done to help.

Please do get in touch with BUS info@birdshot.org.uk and let us know if you have been experiencing this difficulty.

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Flu Vaccine and Pneumonia Vaccine

If you haven’t done so already, and are taking immunosuppressants, please go and get your flu vaccine from your doctors!  A Pneumonia vaccine (Pneumococcal vaccine) is also recommended by some specialists.

WARNING

There is no evidence to show how easy it is to catch flu from someone who has had the live flu vaccine administered by the nose and the risks are probably quite small for birdshotters, but the best advice we can give is “Get your flu jab now!”

PS  I’ve just booked my appointment!

Annie

 

 

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Sight Village Event 5th and 6th November 2013

We have been asked to advertise this exhibition and the details are below.  Also attached here is a pdf poster for the event.  Please also see below for details.

Annie for Team Birdshot

Queen Alexandra College presents Sight Village London 2013

at Kensington Town Hall London W8 7NX on 5th November 10.00am until 4.30pm and 6th November 10.00am until 4.00pm

Admission is free

Unmissable for employers, professionals, end users, public sector.

QAC Sight Village events are the UK’s leading exhibitions of technology, equipment and support services for people who are blind or partially sighted experiencing age related sight problems.

QAC Sight Village is organised by Queen Alexandra College, Birmingham, a National College for People with Visual Impairment and/or other Disabilities.

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Are you in your 20s suffering from Birdshot?

BUS has a facebook friend who is a young sufferer of Birdshot Uveitis who would like to be in touch with others in a similar age bracket. If you would like to be in touch by email or via facebook please do let us know and we will help you connect.  

Annie
.

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RNIB Technology Support Services

Recently a volunteer from RNIB wrote to BUS telling us about a services that they provide for blind and partially-sighted people.  It is called their Technology Support Service and they are asking us to promote it to our members.

The Technology Support Service aims to help blind and partially-sighted people to remain or become independent.  So if your vision has been badly affected by your Birdshot at the moment, or you know someone else who could use this help, you might like to get in touch with RNIB to find out more.  Note you do not have to be registered as partially sighted, but you do need to be based in the UK!

RNIB specialist volunteers – known collectively as the Technology Support Squad – are available to help with all kinds of technology-related tasks such as installing DVD players, connecting PC’s/Laptops, helping individuals access audio libraries, using  DAISY talking book player and many other technical type problems which you might find difficult on your own.

They also have a network of volunteers who are available to help people by visiting them in their homes.

If you think you know of someone who could benefit from the use of this service, please ask them to get in touch with the Technology Support Squad on; 0303 123 9999, email; helpline@rnib.org.uk or find us online; rnib.org.uk/techsupport.

If you do decide to try it out, please do let us know how you get on.  It is always interesting to get feedback about services like this.

Annie

 

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Calling Birdshotters in South Africa

We have a member based in Capetown who  would like to be in touch with others in South Africa who have Birdshot so that you can share your local knowledge and  experience of treatment etc.

If you would like to be put in touch with this Birdshotter, please email us let us  and we will be pleased to put you in touch.

Thank you

Annie for the Birdshot Team

 

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Updated Interaction Advice for Simvastatin

The Medicines and Healthcare products Regulatory Agency (MHRA) has written to healthcare professionals with updated advice about drug interactions between medications containing simvastatin (Zocor, Inegy) and other drugs that may be prescribed at the same time.

Simvastatin is a drug taken to reduce cholesterol and is something that Birdshotters may be taking to counteract a side effect of their medication for Birdshot.

It states that:- “Simvastatin can cause muscle weakness (myopathy) or muscle breakdown leading to kidney damage (rhabdomyolysis) and it was already known that at high doses and if certain other medicines are taken at the same time this risk is increased.”

Of particular note are two drugs which a few our of our members also take are in the list of medicines not be taken at the same time as simvastatin.

They are the immunosuppressant known as Cyclosporine/ciclosporin (Neoral, Sandimmune)

and Amlodine which is  common blood pressure medication.    In this instance it recommends that simvastatin should not be used at a dose of more than 20mg daily

As with cyclosporine it is also important to note that grapefruit juice should be avoided by anyone taking simvastatin.

What does this mean to Birdshotters?

If any of our members are worried about this you  should talk to your doctor or health care professional  about it, rather than just stop taking the medication, because the benefits of treatment with simvastatin continue to outweigh the risks for most people who are on them.

To read the whole alert follow the link below.

http://uk.mediguard.org/alerts/alert/2164.html