Drug side effects and interaction

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.


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.


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.

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

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


We Promised to Re-Issue the Article on Saffron – here it is:

Saffron Improves Vision In AMD Patients

We read about this in the latest Vision Newsletter March 2010. It is interesting to see that some serious research is being done into the affect of Saffron on AMD.  A couple of our members have suggested that Saffron appears to have helped them but we had no idea that scientific research was being done.

A clinical trial has found that saffron, the famous Indian spice, can improve vision in patients with AMD, according to new reports. The trials were conducted by Silvia Bisti of the University of Sydney. The trial participants showed significant vision improvements after taking a saffron pill for three months, she said. “Measurements using objective eye sight tests showed patient’s vision improved after taking the saffron pill. When they were tested with traditional eye charts, a number of patients could read one or two lines smaller than before, while others reported they could read newspapers and books again.” The trial was double blind and randomly controlled, involving 25 subjects over six months. Half the group were given a saffron pill for the first three months followed by a placebo, while the other half were given the pills in the reverse order. “All patients experienced improvements in their vision while taking the saffron pill,” Dr Bisti said. “But when they stopped taking the pill the effect quickly disappeared”


The Eye Bag

In case you haven’t heard of it we’d like to tell you about  “The EyeBag” ,  the re-useable warm eye & eyelid compress designed by Yorkshire Consultant Ophthalmologist and Uveitis Specialist, Mr Teifi James.

Eye Bag Co Ltd logo

Health professionals frequently advise daily warm compresses for lots of common eye problems – Dry Eye, Blepharitis, Styes and Cysts. Hot wet flannels are ineffective and compliance is poor. The EyeBag is designed to treat these conditions. The EyeBag is a simple re-usable black and silver silk hot-compress. It is designed to be heated in a microwave for 20-30 seconds just before use and can be re-heated around 200 times. It is usually used twice a day for the first fortnight and several times a week thereafter. Stunning symptomatic improvement means happier patients with less frequent hospital visits.

You can find an EyeBag stockist near you or order online at http://www.eyebagcompany.com/

Tracey with EyeBag

This is such a simple and effective bit of kit for many people with eye problems that come with uveitis.  Blepharitis and dry eye, for example, are possible complications for people with birdshot due to a compromised immune systems.

We’re delighted to tell you about this particular product because it is effective and easy to use.  The Eye Bag company has generously sponsored  Uveitis Information Group’s work, which includes Birdshot Uveitis Society.

Thank you so much.

Annie and Rea

The right lighting

For  people with sight loss, good lighting and design reduces risks and increases safety, independence and quality of life.  The Macular Disease Society produce a useful leaflet about this called  Lighting Advice.

Lighting and design at home

Making the best use of lighting is important for everyone, but even more so if you have poor vision. Good lighting in the home is essential, and yet it is often overlooked. Continue reading