Author Archives: Annie

Potential Herb and Supplement and Drug interactions

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Many of us take a range of herbs and supplements in order to try and keep ourselves well throughout our often toxic treatment for Birdshot.  We should always check these herbs and supplements with our consultants, there can be adverse interactions between these and medications we are taking.  We should all remember that just because we can buy them over the counter, this does not mean they are always totally safe, especially when we are taking a range of medications.

We have attached here a PDF which identifies potential herb and drug/medication interactions.  It lists most of the commonly used herbs.

We thought that the most striking ones were:

  • Licorice which increases the level of drug in our body by decreasing drug metabolism (i.e. the rate at which our bodies absorb the drug).   **** (Please see comment number 2 below)
  • Polyphenol – contained in Chamomile and Green tea, lime flowers and Rosemary which is said to reduce the absorption of iron.
  • Bilberry and Tumeric might affect your aniplatelet activity (antiplatelets help ensure we don’t get thrombosis)
  • Valerian may increase the effect of CNS depressants (sedatives or tranquillisers) or alcohol

Hopefully, this article will alert us all to the potential consequences of taking large doses of some herbs, if we are on medication.

Birdshot Day DVD

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The Birdshot Day DVD has finally arrived. It contains recordings of all of the days talks, interviews with people with Birdshot, health professionals, charities and low vision specialists who attended.

Today we have written to everyone who came to the day telling them about it and asking if they want to receive copies. We have written to our consultant specialists to see if they want copies, but we also want to hear from you if you would like to receive a copy as well. (subject to availability!)

We have a limited stock, and what we are suggesting is, rather than charge for the DVD, you can make a small donation to help pay for the postage and packaging costs, with anything left over going towards a future Birdshot Day. To do so, please press the donate button on the website.

If you would like a copy, please email us and let us know where you would like the DVD delivered to. Annie and Rea

 

Credit: David Bethell graphic artist – DVD cover design

Implants – will you share your experiences please!

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We are looking for individuals who have had either type of implant, Retisert or Ozurdex, who would be interested in sharing their experiences about this type of treatment with people who are considering treating their birdshot in this way.

We believe that there have been more of this kind of operation in the USA than in the UK and would really appreciate it if anyone who reads this post, who has had this done could get in touch with us at via our contact form, so we can link you up with a couple of our members who are anxious to chat to people who have had this done, so that they can get some first hand feed-back.

Alternately, if you don’t want to email individuals directly we would love to have a write up on your experiences which we could publish on the website for all our members to read, or you could log-on to our forum and post details of your experience there.

Thanks. It is great to have a Birdshot community like this so that we can share experiences. We look forward to hearing from you soon.

Annie and Rea

Counterintuitive Cure

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“The human body’s immune system can quickly track down and kill cells that don’t belong. Take certain kinds of bacteria: molecules on their surfaces flag them as foreign invaders, alerting the body’s defenders to the breach and drawing a full-fledged attack on anything waving that molecular flag. But sometimes the system mistakenly attacks the body’s own cells. The result is autoimmune disease, such as type 1 diabetes, in which the insulin-producing beta cells of the pancreas are attacked and destroyed by T cells. ” Read about this in an article by Katie Moisse entitled: Counterintuitive Cure: A Nanovaccine That Stops Autoimmune Disease by Boosting the Immune System which describes a new treatment which prevents type 1 diabetes in mice by turning the immune system on itself.

It seems to us that direct parallels can be drawn for our disease Birdshot Chorioretinopathy and this idea could be useful in finding us a cure.

Rea and Annie

Invitreal implant for Non-infectious uveitis

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This study looks at eyes receiving fluocinolone acetonide implants  (Retisert) over a 7 year period and concludes that there is a high risk of developing cataracts and increasing intraocular pressure  (glaucoma).   The study authors include people who were involved in the Bausch and Lomb trials.

This type of  implant is not currently licensed for use in the UK, so you would have to be an extremely special circumstance to qualify for this type of treatment at the moment.

However for those with Birdshot, with bad inflammation, who can not tolerate sytemic steroids they do provide a potential, if not ideal option for treating inflammation in the eye.

http://www.ophsource.org/periodicals/ophtha/article/S0161-6420(11)00229-6/abstract

You can also see  our earlier post about this type of device: –https://birdshot.org.uk/dexamethasone-for-ocular-inflammation/

Is green tea more than just good for you?

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Some novel research has been undertaken into Green Tea.   It was published in Immunology letters 2011 May 20, and is entitled:- “Induction of regulatory T cells by green tea polyphenol EGCG.”

The study  provides evidence as to why green tea might help to modify  immune system behaviour and hopefully provides the foundation for future studies to further examine and evaluate dietary strategies to see if they might be used to help to control the immune system.

We are not sure how many of gallons of green tea you would need to consume to produce the required effect!

If you want to read more technical detail about this research, follow the link below.

URL – http://www.ncbi.nlm.nih.gov/pubmed/21621552?dopt=Citation

We know some of our members have told us that they like to drink green tea in the hope that it might do them some good.    If you are interested in some green tea recommendations – here are some  varieties to try, courtesy of our Ozzie friend Neil who has obviously got into it in  a big way on a work trip to China.

“I had a ten day aid mission to Chong Qing central China and fell ill on inward flight with shocking cold and cough.

All meetings with Chinese involved a thermos of green tea.  I found it stopped my cough so I became the green tea monitor for the duration and the Chinese thought I was a definite convert!

For variety, try japanese green tea with baked rice flavour added.

Mid level good quality green tea is called Long Jin

Personally, I hadn’t thought of it for wider use than digestion.”  Neil

Easy Fundraising!

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We’ve just banked our second cheque from Easyfundraising and are  pleased to announce that we have raised nearly £65.00 from the 7  people who have signed up for this simple way of doing normal on-line shopping.   Thank you so much to those seven people for signing up!

It might not sound like much, but every penny counts and if all our members decided to shop this way, it would soon mount up!  It’s  an easy and free way for you to support Birdshot Uveitis Society.    The brilliant thing about this way of giving  is that it doesn’t cost you a penny.

We’ve teamed up with Easyfundraising who provide a shopping directory listing some of your favourite online stores. Hundreds of popular retailers are participating including Argos, Next, Debenhams, John Lewis, Toys R Us, M&S and over 2000 others.  You can buy anything from books, DVDs and clothes,  to larger items like  washing machines and computers.    It’s also  great for buying Birthday and Christmas presents.

All you need to do is use the links provided on the easyfundraising site whenever you shop online. The retailer will then give Birdshot Uveitis Society up to15% of every purchase you make – it’s that simple!

It doesn’t cost a penny extra to shop and raise funds in this way, and you can even save money as many retailers give exclusive discounts, special offers and even ‘e-vouchers’ exclusive to easyfundraising.

If you already shop online why not help raise extra funds for us by using this completely free service? Follow the instructions below to find out how.

It is as easy as 1-2-3 and it’s FREE!

1. Go to www.easyfundraising.org.uk/causes/bus and register for FREE!

2. Once you are registered, use the links on the easyfundraising site to go to your favourite online shops and shop in the usual way.

3. Every time you shop online, log on to www.easyfundraising.org.uk and use their links to visit your favourite shops.

Please encourage your friends and family to sign up too and raise even more money for Birdshot Uveitis Society.

That’s all you need to do – apart from remembering to return to our site next time you are going to shop online!!

Providing you login and use the retailer links provided we’ll track all your transactions and pay your nominated cause the appropriate donations. These will then be displayed in your easyfundraising account (which you can access online).

If you have any questions or require further assistance please see the Easyfundraising  FAQ section.

 

 

Please can you tell us where you live?

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If you have a birdshot diagnosis,  please can you  kindly tell us which town/village or city do you live in and which hospital are you treated at.  Please do this via a  short email to Rea and Annie at birdshot@live.co.uk.

We have access to mapping software and thought it would be interesting to map the geographical location of people we know with Birdshot, together with the centres we know where Birdshot is treated.

We  already have this information for around a hundred of our members,  but it would be great if it could include a bigger group.

This map is something we wish to develop.   It will help us pinpoint areas in the country where we could have a local support group.  It will also be interesting to see if there are more people with a birdshot diagnosis in particular geographic locations.   Who knows what we might discover!

Overseas members are also welcome to let us have this information as it will be very interesting to do this globally as well.

We look forward to hearing from all of you.

 

Annie and Rea

 

Website down-time

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Please accept our apologies for the fact that the site was down for a few hours on Tuesday.  We moved server and it took a little time to get the site back up and running.  It all now appears to be working fine, but if anyone spots something not working correctly we ‘d be very glad if you could let us know, so we can put it right.

Please note that passwords for the old site log-in no longer work.  We will be doing a manual reset and notifying you of your password in due course.

Your log-in to the forum has not changed.   The forum is proving to be a useful way for members to communicate with each other.    If you want to sign up and need our help to do so, please let us know.

Annie and Rea

 

 

 

anti-VEGF treatment for complications of Birdshot

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An important piece of research about treatment with anti-VEGF (anti vascular endothelial growth factor) for complications of Birdshot (and other inflammatory chorioretinal diseases) has been published.  The complications tend to be macular oedema (ME) and choroidal neovascularisation (NVC).  Some of you have been prescribed these anti-VEGFs – the most common of them being Lucentis (called ranibizumab) and Avastin (called bevacizumab).

The research findings seem to show that there have been positive results in retaining visual acuity for many people with complications when using these medications.  However, the researchers also point out that it has not been possible to undertake randomised clinical trials for people with uveitis who have macular oedema or neovascularisation and are on anti-VEGF, so they are suggesting that further trials and longer follow up is needed.   For us, it is another piece of preliminary good news, and another weapon in our armoury against Birdshot and its complications.  We recognise that further testing is required, but at least it gives us another option.

This research was conducted in Italy and we attach below a summary of the findings.

Dev Ophthalmol. 2010; vol. 46 pp. 84-95

Antivascular endothelial growth factors for inflammatory chorioretinal disorders.

Battaglia Parodi M, Iacono P, Verbraak FD, Bandello F

Macular edema (ME) and choroidal neovascularization (CNV) can complicate the course of several inflammatory chorioretinal diseases, leading to a severe visual function impairment. The most frequently involved clinical entities include for example multifocal choroiditis, presumed ocular histoplasmosis syndrome, Beçhet’s disease, multiple evanescent white dot syndrome, birdshot chorioretinopathy, acute multifocal posterior placoid pigment epitheliopathy, serpiginous choroiditis, and persistent placoid maculopathy. Results that have reported on antivascular endothelial growth factor (anti-VEGF) treatment in uveitic patients with CNV or ME have demonstrated positive results in many cases. However, bearing in mind that it has been proven impossible to perform randomized clinical trials with anti-VEGF in uveitic patients with CNV or ME, further studies with longer follow-ups are necessary to assess the value of this therapeutic approach.

PMID: 20703034
URL – http://www.ncbi.nlm.nih.gov/pubmed/20703034?dopt=Citation