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.

http://www.bmj.com/cgi/content/full/340/may19_4/c2197#SEC1

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.

http://www.india-server.com/news/vitamin-b1-can-be-helpful-in-treating-7032.html

“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.

The scientists of University of Texas Medical Branch at Galveston conducted their experiment on rats. The laboratory rats were injected with bacterial toxins that cause inflammatory disorder just like uveitis. After that, the rats were given the supplementation of benfotiamene and interestingly their body resisted all kinds of inflammation. According to the Indian origin scientist Kota V. Ramana, benfotiamene has the ability to suppress eye inflammation.

Ramana explained that benfotiamene actually suppresses the activation of a crucial signalling molecule called NF-kappa B, which causes inflammation. According to him, the new findings will contribute to the development of new therapy for the widespread eye disease called uveitis. The findings of the study were published in the Journal Investigative Ophthalmology and Visual Science.”

This sounds an interesting cheap and non-toxic idea, if it works in humans!

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”

http://www.myvisiontest.com/news.php

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.

The presentation can be accessed at:

http://www.eurordis.org/sites/default/files/publications/3_FBignami_RDD2010.pdf

We would like our first  Birdshot Patient Day to be the start of increased awareness about birdshot,  better diagnosis of the disease and increased research into better and less toxic treatments.  The Day will be a true partnership between patients, healthcare professionals and researchers, and it is our opportunity to begin to influence the research agenda into Birdshot.

Annie and Rea

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.

Annie

“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.

Alendronate is the drug we know as Fosamax. It belongs to a class of drugs called bisphosphonates. These chemicals were developed in the 19th century but were not investigated until the 1960s for bone metabolism. Their non-medical use was to soften water in irrigation systems used in orange groves. The rationale for giving them to people is that they prevent the dissolution of hydroxylapatite, the principal bone mineral, so stopping bone loss. Only in the 1990s was their actual mechanism of action explained when Merck brought Fosamax to the market place.

There is little doubt that these drugs do what they are supposed to over the short term: they increase bone density and decrease fracture risk.”

“From the first use of these drugs, there was always a theoretical worry. Recall that there are two main processes that occur constantly in the bone: osteoclastic activity that breaks down old bone, and osteoblastic activity that builds up new bone. This constant turnover of bone maintains healthy and strong bone. These drugs stop the osteoclastic activity so that the old bone is left untouched. This increases bone density measurements. The worry was that because these drugs halt normal bone turnover people using them would end up with dense but more brittle bones. As the early studies consistently showed a rapid reduction in fracture rates, this concern faded.

These early worries unfortunately were not just a product of naturopathic paranoia; the problems just took a few years to show up.

The May/June 2008 issue of The Journal of Orthopaedic Trauma published a report on “Low-energy femoral shaft fractures associated with alendronate use.” The authors reviewed records of 70 patients who had sustained low energy femur fractures. That means their femurs broke without any major stress. Rather they did little things such as walking or stepped off a curb and thus triggered the breaks. These weren’t young people, their average age was about 75. Of these 70 patients, 25 of them, a little over a third (36%), were taking Fosamax. Nineteen (76%) of those 25 patients demonstrated a simple, transverse fracture with a unicortical beak in an area of cortical hypertrophy. This is a rare and peculiar type of fracture. Only 1 patient of those not taking Fossamax (2%) had this kind of bone break. When the statistics were worked out, the numbers tell us that Fosamax use significantly increased risk of these fractures: the odds ratio was 139.33, 95% CI [19.0-939.4], P < 0.0001). You can say those taking Fosamax were about 140 times more likely to get one of these rare fractures. It took about 7 years for this problem to occur. Those taking Fosamax less than 2.5 years were not at greater risk.

A 2009 paper in Geriatrics continued this story. It tells us that, “The fractures are often preceded by pain in the affected thigh…” this paper suggests that patients not take Fosamax for longer than five years. Another 2009 article, this one in Clinical Calcium, echoed this warning and suggested that, “… alendronate treatment might be stopped for a while after 5 years to prevent [these kinds of]… fractures.”

Few doctors and fewer patients are paying attention to duration of Fosamax use. Most patients will report they’ve taken Fosamax, “for awhile.” We need to start spreading the message, “for awhile” should be less than five years.”

“In our practice we are suggesting a break from use after a shorter period of time, about three years. Discontinuing Fosamax use and relying solely on naturopathic treatments even for an interval of time, may, in the long run prove to be a safer course of action.”

For the full article and links to the relevant research:

http://www.denvernaturopathic.com/fosamaxBreak.htm

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

Each drug has a different instruction

In the case of prednisolone,  it should be as early in the morning as possible, so as to replicates what your own body clock does, with your naturally produced cortisol.  Not in the evening before bedtime, as one birdshot friend of mine was doing.  No wonder sleep was difficult!  But prednisolone  should also be taken with food, as it can be hard on the stomach lining and make you sick if taken on an empty stomach.  So  no skipping breakfast!

In the case of immunosuppressants like cyclosporin, tacrolimus and cellcept They must not be taken with a heavy meal, ( I think they recommend an hour before food, or two hours after,)  as food reduces the absorbtion of the drugs and results in your body getting a different dose to the one you think you are giving it.

In the case of cyclosporin, not with anything to do with grapefruit, as that increases the absorbtion of the drug and can have a bad affect on your liver. Beware, this includes juice drinks that have a small amount of grapefuit in them like “Lilt”.  Read the label.

Your doctors should have given you instructions but if you have forgotten what they are you can always remind yourselves with the ones that come with the pill!

I have read several tales of woe from people posting on the birdshot Lefora website about this, and  heard several stories personally of people who skipped their birdshot medication over Christmas and as a result of this,  (or the stress of Christmas itself?)  had a flare!

I am as guilty of it as the next person,  if I find I have run out of cellcept at work, for example, I am easily tempted not to go home to collect the pills I have forgotten,  so that I can take my medication at my prescribed time.

I know from my own experience, it’s just not worth it.  Annie

Zenapax has been used successfully to treat a number of patients with birdshot in the US  who have failed to control their birdshot with other medications or been unable to tolerate the side effects of other drugs.    It will leave a number of people who are prescribed this, angry, as the news about the withdrawal of this drug was at short notice and their doctors will now have to find alternative medication.  Often this will not be straightforward as this drug will have been prescribed only after a number of the more usual combinations have been tried and have failed.

I do not believe that this medication has  been widely used in the UK for birdshot treatment but it is a major blow that one of our speciaist arsenal of drugs has been removed though no real good reason other than economics.

If you have been affected by this decision by Roche we would welcome your feedback.