Potential Herb and Supplement and Drug interactions

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

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!

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

Is green tea more than just good for you?

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

Please can you tell us where you live?

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

 

Article about Birdshot in Optometry Today

Below is a link to an article which appeared in the April 2011 edition of Optometry Today. ” Birdshot Case Study“.    It was written for us by Emily Kirkby, a student who was involved in the Birdshot Day in September 2010, with help from Rea, her consultant Nigel Hall, Narciss Okhravi and other members of the Birdshot team.

As  most of us with a Birdshot diagnosis know, Birdshot Chorioretinopathy is difficult to diagnose, particularly in the early stages before the tell tale lesions appear.  A  case study like this that appears in a widely read optometry magazine should help to make optometrists more aware about this rare autoimmune eye condition.  Opticians are the people we often first turn to when we have eye problems.  With Birdshot, it is really important to get speedy treatment and if the optometrist or optician is informed about it, we stand a chance of this happening.

Please let your optometrist know about this article – help spread the word.

Neil’s story

An Australian Birdshot colleague of ours called Neil, recently wrote to us to tell us about his experimental approach to supplements. He has been trying to find a way of improving his vision through supplements and told us why he had decided to do this.

Over the years he has been on a number of the usual toxic treatments. Following a recent flare he was put on prednisolone and methotrexate. He reports that after some months on the methotrexate, a wavy line suggested his eyes were continuing to deteriorate and 15 mg/day of prednisolone was added for a couple of months after an ERG result showed rods were bad; cones were indicating nobody home!

Here is Neil’s story in his own words (much of what he says will ring bells with many of us).

“I noticed an article http://abstracts.iovs.org/cgi/content/abstract/43/12/2542 on increased retinal activity following a trial of a group of people taking lutein, nicotinamide (vitamin B group) and vitamin E, so thought I might as well try it for myself to see if it made any difference to my ERG tests, on the assumption that it would not have a negative effect.

To mimic the study, I took a bilberry and lutein tablet, a multi-B and vitamin E tablet. In addition I took folic acid in the Multi-B which I understand helps with tolerating Methotrexate.

The ERG in January and check up in March showed that the left eye reading level had returned to the level two years previously (couple of extra lines) and I am seeing a little more when I enter a darkened room.

Retinal inflammation has gone with prednisone and I can read with my left eye again.

So all I can say is the lutein, nicotinamide and vitamin E didn’t harm my outcome.

Here are the details of what I took.

The Health food shop found me NutriVital Mega B High Potency tabs one per day
viz: http://www.nutrivital.com.au/product_detail.php?seq=23

I added Natures Way Vitamin E 500 iu – one per day although I didn’t take quite as reliably)
and 
Bilberry 10,000 plus with lutein by Micro genics vision deficiency formula – one per day
http://www.micro-genics.com.au/product/bilberry-10000-plus-vision.html

I also used Nutralife Bilberry 10,000 plus + lutein complex as the tablets were easier to take from a bottle rather than in foil.

Subsequently my GP recommended I increase the folic acid to 5mg/day to counter methotrexate effects, but the improvement was evident before then.

I was on 10 mg methotrexate once per week for a few months after complaining of loss of central clarity in left eye and an ERG test that showed basically non-detectable response to rods and cones with some small response to flashing light, but not for night vision. Some wavy lines at the edge of the computer screen worried me and a scan showed some retinal swelling in central left eye, so (reluctantly) I added 15 mg/day prednisone.

I tapered this back myself to 10 mg/day until just before the next ERG was due… then…
Coming back from a fishing trip I noticed light poles bent half way up – 1m to the right through my left eye, so I boosted for a few days to 20mg/day prednisone to try to cheat on my ERG.

After verbally savaging my 20 year old son and snapping at my wife, I admitted defeat and reduced the dosage of steroids.
ERG showed 50’s and 60’s for rods and cones this time and I felt night vision had returned to vaguely useful entering a dark room and possibly dusk driving. (evidently normal range is 250 to 600 so I hardly starred it, but it’s better measurably)
Stayed on 12.5 mg/day prednisone for a couple of months and bent poles went away – slight horizontal bump in reading 12 point letters but left eye continues to improve and down to 10 mg/day prednisone.

Eye section scan showed rods and cones in left eye looking reasonably normal thickness in parts of scan which is interesting as I feel my peripheral vision has improved in that eye. Eye chart was about 2 lines better with pinhole as glare still a problem so I’m back to 2009 levels on the irrelevant eye test.

My choice of sunglasses has changed from dark grey or yellow to light grey polarised and I can almost say glare tolerance is improving as a consequence of this choice for driving.

Can’t say if prednisone or supplement has contributed to improvement but I continue to take both as the trial lasted 12 months and I am 7 or 8 months on from trying it.

Red wine, chocolate and thai curries are also a feature as is dark matured Australian Bundaberg Rum with Coca-Cola, so feel free to adopt any that appeal – with lots of fresh fruit.”

LoL Neil

 

 

Atypical Birdshot?

Anyone out there with symptoms that don’t seem typical for Birdshot?

How many people are affected in just one eye? Many consultants believe that Birdshot is bilateral (i.e. it affects BOTH eyes) and would not diagnose Birdshot if it affects just one eye – do we think this is true? If it is not Birdshot, then what is it?

How many people have pain in their eyes? Birdshot is thought to be painless. I know that I have very painful eyes, particular if I move them (shooting pain deep in the eye), and I know of at least two others who say the same. Anyone else?

How many people have been diagnosed with Birdshot but do not test positive for HLA A29? Again, some consultants would refuse to diagnose Birdshot if there is no HLA A29 positive test. What do we think?

How many people have strange visual symptoms which baffle their consultants? For example, I seem to have images left on my retina for a long time. I will put my keys down, and then I see my keys on a range of other surfaces as I look around, making it very difficult for me to find my keys again! I also have illusions – I will be walking down the street, and I will see a very large cow walking towards me – impossible, I know. What I think is happening is that there is a large shadow, and my brain tries to make sense of this by accessing its filing cabinet to find something of that shape and size, and interprets it as a cow!

How many people have found that their brain seems to have slowed down when trying to see? For example, I will look at my emails, and although I can ’see’ them, I cannot actually read them – the mass of information in a long list just does not compute in my brain – its seems like gobbledegook – although if I look at individual words, I can make them out – I just can’t make sense of the totality of it.

Any other strange symptoms people have? Or things that seem atypical of Birdshot?

We are trying to understand the complexities of Birdshot, so it would be really good to hear all your stories. That way, we may be able to understand whether people have been possibly misdiagnosed, or whether Birdshot presents quite differently in different individuals, or whether there are a range of other problems that masquerade as Birdshot.

As always, we want to thank you for your interest in Birdshot and this website – we have had a huge influx of new members recently and each new member brings more knowledge and understanding of Birdshot. Thank you all, and we would be grateful for your feed-back on atypical (or typical) signs of Birdshot.

Rea

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