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

Orphan drug status for GEVOKIZUMAB

Gevokizumab is a monoclonal antibody that shuts down inflammation brought on by a protein in our bodies called interleukin-1 beta.

The pharma that produces Gevokizumab has been focusing on diabetes but now, with the orphan drug status , it means that it will get financial help to trial the drug on non-infectious and pan uveitis.

We don’t know, at this stage, whether is will work on Birdshot, but it is exciting to see new drugs coming on to the market.  It is even more exciting to see pharmas getting orphan drug status for new medications.

Read the full article at:

http://www.bizjournals.com/sanfrancisco/blog/biotech/2012/08/xoma-gevokizumab-uveitis-orphan-drug.html

OCT on Retinas of Birdshotters

Three people from Lausanne, Switzerland, including Carl Herbort who has been very supportive of BUS, have looked at the retinas of 28 Birdshot eyes and retrospectively evaluated the OCT findings of these eyes, to see what changes there are in the retina over a long period of time.

They looked at the OCT results in early Birdshot (less than 1 year), intermediate (1 to 6 years) and late (more than 6 years).

What they found was that in early Birdshot, the retinal thickness was significantly elevated (i.e. it was thicker than usual) because of the inflammation and vasculitis.  The thickness begins to diminish in intermediate Birdshot and by late Birdshot, the retina is significantly thinned.  They also observed that 92% of these eyes had developed an epiretinal membrane by late Birdshot.  An epiretinal membrane is a thin sheet of fibrous tissue that grows over the retina.  For those of us with Birdshot, an epiretinal membrane may develop because the vitreous (the jelly inside our eyes) pulls away from the retina due to the inflammation. Epiretinal membranes can cause visual problems, although most of us with an epiretinal membrane do not even notice any issues.

The interesting thing about this research is that if some-one has had a delayed diagnosis, their OCT results may help determine approximately how long they have had Birdshot for.

For more information on this piece of research, follow the link:

http://www.ncbi.nlm.nih.gov/pubmed/22909176

New Study Links Bisphosphonates to Vision Problems Risk

We have posted before about oral bisphosphonates (including Fosamax) and emerging evidence that first-time use of these is associated with a greater risk of developing two inflammatory diseases: uveitis and scleritis.

We have also posted on the risks of bisphosphonates in relation to atypical femur fractures.

The article highlights both these risks and can be found at:

http://www.prweb.com/releases/2012/9/prweb9883870.htm

The important thing to remember is that you need advice about your drug regime and the interactions of each of your medications, as well as the potential benefits and risks, so you can make an informed decision.  The risks highlighted in this article may be outweighed by the benefits in individual case – only you and your consultant can decide between you.

We, with Birdshot, who take high doses of steroids need to protect our bones.  So, becoming informed about our condition, our medication regimes, interactions and risks and benefits is really important.

Worms Again!

We have posted before about helminthic therapy – worms that can modulate the immune system and prevent it from attacking the body’s own tissues and organs.

Well, the time has come for mid stage trials on this therapy.  Currently, 220 people with Crohn’s Disease in the US are being enrolled on a mid stage trial and in Europe a further mid stage trial is being started.

The drug is called Trichuris Suis Ova (TSO) and consists of thousands of microscopic parasite eggs, suspended in saline solution – the drug is swallowed just like a tablet.  The parasites are killed off in our stomachs, but the hypothesis is that, before they die off, they are able to modulate our immune systems.

If these trials go well, we are not too far off from having this new drug available on the market.

Read the full story at:

http://www.reuters.com/article/2012/08/30/us-usa-health-parasites-idUSBRE87T14720120830

Autoimmune Researcher Gets Money

At long last it looks as though the world has finally woken up to the fact that autoimmune diseases are the modern day health problem.  There are over 100 different autoimmune diseases, many of them rare, and more and more people are being diagnosed with autoimmune diseases and no-one knows why.

A researcher in Australia, Chris Goodhew has received a grant from GlaxoSmithKline and he will look at why the immune system is attacking in the first place.  He has a vested interest as his mother has an autoimmune disease, lupus!

It is really good to see a major pharma investing in auto-immune diseases.

Read the full article at

http://www.canberratimes.com.au/act-news/80000-boost-for-autoimmune-researcher-20120911-25qs6.html

Documentary on Rare Diseases

Two showings of RARE, a feature documentary that provides a closer look at the relationship between patients, advocacy groups and researchers involved in developing new treatments for rare diseases has just been aired in the US.

It is a really interesting documentary and highlights the importance of patient organisations like BUS being fully involved in the research process.  In fact, if you see the documentary, it is strangely reminiscent of the development of BUS!

If you want to see a short version of the documentary go to:

http://vimeo.com/46443548

If you want to read the article go to

http://scopeblog.stanford.edu/2012/09/07/stanford-filmakers-documentary-on-rare-diseases-to-air-next-week-on-kqed/

What your eyes reveal about your health

The Wall Street Journal published a really interesting article in August on how your eyes can reveal clues to your general health.

An ophthalmologist, Dr David Ingvoldstad from Midwest Eye Care in Omaha, Nebraska regularly alerts his patients to possible autoimmune diseases they may be at risk from or have, such as rheumatoid arthritis and lupus.  He does this through their vision changes, or through the state of health of their eyes.  He has even been able to monitor the progression of a patient’s diabetes through their eyes, and once alerted a patient to the fact that they had a brain tumour, based on the changes in their vision.

He is able to do this because the body’s systems are interconnected, and changes in the eye can reflect changes in the vascular, nervous and immune system.

The article suggests that, with regular monitoring, ophthalmologists can be the first to spot certain medical conditions and can ensure that patients receive early care and treatment.

We, with Birdshot, are regularly monitored!  One benefit of having Birdshot.

Read the full article at:

http://online.wsj.com/article/SB10000872396390444184704577587211317837868.html

Digital Dogooders supporting Birdshot Uveitis Society

Six individuals from the online retail and digital industry, known as DIGITAL DOGOODERS are taking part in a tandem sky dive in aid of BUS.  They are helping us to create awareness and publicize the work of  BUS  and also helping us sell tickets for the Winter Benefit on the 3rd November to their colleagues and friends.

The fool hardy folks of Digital Dogooders are – Leon Bailey Green, Jonathan Hall, Gabrielle Hase, Helen Colclough, James Gurd and Fergal O’Mullane.

If you would like to support their jump you can make a donation to BUS  through their Bmycharity page http://www.bmycharity.com/birdshotwinterbenefit

This a great intiative and we are very grateful to this intrepid team for supporting us and helping us in this way.  We hope it will be the first of many adventures!

Thank you so much to the “Digital Dogooders” for your support!

A patients perspective – does anyone want to tell their story?

BUS have been contacted by NB Magazine (the RNIB eye health and sight loss magazine for professionals), and asked if we have any member who might be interested in writing a short article about their experience of Birdshot Uveitis (just 800 words).    This regular column features  the experiences of people with sight loss, covering a different eye condition each time, and describing what it’s like to live with the condition, the support (or otherwise) they have met with along the way, including solutions they have found helpful and what constitutes an ‘ideal world’. It is also an opportunity to feature the work of self-help groups (ie will provide publicity for Birdshot Uveitis Society) .

If there are any members of BUS who would like to do this please get in touch with us as soon as possible.  Ideally they are hoping it can be done for 11th September deadline which is short notice!   info@birdshot.org.uk