LX211 submission for approval in US and Europe

We have been asked by a number of  our members if we know anything about the about the progress of the LX211 trials which highlighted LX211 as potential disease modifying therapy for noninfectious uveitis.  Birdshot is a non infectious form of posterior uveitis.

In February we read that Lux Biosciences was preparing to file for US and European approval.  If the drug is approved it will be the first drug licencensed in the US and Europe specifically for uveitis.  We would assume that licencing in the UK would be likely to follow this.

On 4th August, Isotechnika Pharma Inc, Lux’s US partners sent out a press release which stated that before approval would be given in the US, further trials were needed to check out the drugs safety.  It stated that approval remained on course for Europe. http://micro.newswire.ca/release.cgi?rkey=1808048256&view=64134-0&Start=0&htm=0

We are not sure how long the process takes for licencing to occur but we are watching out for developments.

Unintended effects of Statins

Rea came across this piece of research, published in the BMJ last week, which highlights increased risk of liver/kidney damage and myopathy and cataracts from taking statins.  The research highlights some of the possible side effects of taking higher doses of statins.

As a result of this, Doctors are being urged to choose the lowest possible dose when they prescribe cholesterol lowering statins.

If you currently take statins  you may wish to review this with your GP and Ophthalmologist, discuss the benefits against the risks to find out if drug you are prescribed should be changed.

The link below takes you to the published paper.



Recent research has shown that individuals who smoke have a 2.2 times higher odds than those who had never smoked of having ocular inflammation, with all anatomic subtypes of uveitis associated with a positive smoking history.

In the study, a positive smoking history had an odds ratio of 1.7 (P =.002) for anterior uveitis; 2.7 (P = .005) for intermediate uveitis; 3.2 (P = .014) for posterior uveitis; and 3.9 (P < .001) for panuveitis.

The odds ratio for panuveitis and cystoid macular edema (CME) was 8.0; for those without CME, it was 3.1, according to the study.

“A history of smoking is significantly associated with all anatomic subtypes of uveitis and infectious uveitis,” the study authors said.

“The association was greater in patients with intermediate uveitis and panuveitis with CME compared with those without CME. In view of the known risks of smoking, these findings, if replicated, would give an additional reason to recommend smoking cessation in patients with uveitis.”

The retrospective case-control medical record review looked at 564 patients who had ocular inflammation and 564 randomly selected eyeclinic subjects. All patients were seen at the Proctor Medical Group between 2002 and 2009.

The study employed a logistic regression analysis. Ocular inflammationwas the main outcome variable, and smoking was the main predictor variable variable, with adjustments for age, gender, race and median income.

So if you are a smoker and you have birdshot, you know what you should be trying to do!  It’s obvious smoking can’t help.

Ophthalmology. 2010;117(3):585-590.

Vitamin B1

We came across an article about Vitamin B1 and how it might be helpful in treating common cause of blindness.


“According to a research team led by an Indian origin scientist, vitamin B1 can be effective in treating common cause of blindness. The scientists claimed that supplementation of a particular type of vitamin B1 known as benfotiamene can significantly treat uveitis, which causes blindness in human eyes. Uveitis is a malady that causes inflammation of the tissue located just below the outer surface of the eyeball. If the disease is not treated properly, it can cause blindness. Continue reading


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. Continue reading

The Importance of Patients in Research of Rare Diseases

It seems very apt, when we have just finalised the date for our  first Birdshot Patient Day for Saturday 11th September 2010, to come across some research by EURORDIS (the EURopean Organisation for Rare DISeases).  EURORDIS is the voice of ‘patients with rare diseases across Europe’.

The survey has found that rare disease patient organisations (such as BUS, the Birdshot Chorioretinopathy Uveitis Society) play important roles as catalysts for research on their respective diseases. They can also be valuable partners in identifying the gaps and supporting early research in areas not covered by the public or private sectors.

Continue reading

Prescription Pre-payment

If you have been recently diagnosed with Birdshot you may not realise immediately that you should apply for a  pre-payment certificate for your prescriptions.  It will save you money in the long run.   The current cost is £104.00 for a 12-month PPC.  You don’t have to pay for it in one go,  I pay a monthly £8.70 for mine, by direct debit.

If prescription charges go up, you are covered for the rest of the year so you will not be affected immediately by price increases.

This link takes you to the NHS website to the page which has all the information about how to obtain the card.


Alendronic Acid – Take a break!

Take a break to prevent a break!

“Don’t use it for more than five years!”

We recently came across this article about the long term effects of Alendronic acid and thought we should bring it to your attention.  The long and the short of it is that it is not a good idea to use the drug for periods of longer than 5 years,  as it has the effect of making your bones go brittle and actually causing breaks.

Naturopath,  Jacob Schor, ND, FABNO,  writes:

“The drugs that have been used with apparent success to treat osteoporosis may now have a problem. Alendronate may weaken bone and lead to increased fracture risk. Continue reading

"Making Contact" – Brenda Snow

There’s an interesting article written in this month’s “Pharmaceutical Marketing Europe” magazine entitled “Make Contact” by Brenda Snow who suffers from MS.

It states that “taking the time to listen to sufferers’ stories helps patients, doctors and industry relate and benefit.”

There’s a lot that will ring true for people with birdshot – below I post a part of her introduction:-

“Life isn’t always fair, it’s a lesson we all have to learn eventually.  It’s how we deal with those bouts of unfairness that help define us as individuals.  Sometimes, dealing with adversity can actually have positive outcomes.

The pharmaceutical company/patient relationship is changing and should continue to change and develop, moving forward.

The pharmaceutical company/patient relationship has traditionally been: patient gets ill; patient visits doctor; doctor talks to patient; doctor prescribes medication for patient; patient receives medication from pharmacist, and hopefully patient reads patient information leaflet.  In essence there has not been any kind of real relationship or genuine connection.

My first suggestion is that pharmaceutical companies need to listen to patients in order to focus more on what matters to the patient population.  Many pharmaceutical companies are doing this already.  Those that are not should at least be cognizant of what is being said about them, specifically online.  This is a plea for pharmaceutical companies to connect with the patient communities they serve.”   Follow this link to read the whole article.

I called Brenda Snow because I was interested  to see if she had any ideas about what could be done to ease the supply of cellcept, or change Roche’s decision in relation to Zenapax.  She was very friendly and helpful.

She suggested that if the supply of Cellcept was so difficult, we could perhaps ask our doctors to consider prescribing a very similar drug called Myfortic,  which apparently has an enteric coating on  it which makes it less harsh on the stomach, but it uses similar ingredients to cellcept as is often used successfully for transplant patients.

As far as Zenapax was concerned she said she said she would try to see what could be done, including find out if there are any generic versions of the drug.

We’ll let you know what we find out.  Annie