News
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
Battle to find Cellcept
Rea has just had another battle to get hold of cellcept. Usual story – all supplies used up. She finally got it from her very local, small pharmacist who is now trying to find further stocks for her and one other patient they have on cellcept. Rea is not alone. Annie’s pharmacist has experienced a recurrent problem getting hold of the pills, but he has, up to now, never let her down.
The difficulty seems to be that wholesalers use up their quota of cellcept quite quickly. Smaller pharmacists seem, in our experience, much more willing to order direct from Roche (the manufacturer of Cellcept), if the wholesalers have used up their supplies. Smaller pharmacists are, in our opinion, also able to build up a relationship with their customers and understand their illness, and the complications inherent in each type of medication their customers are using. As Rea said: ‘My local pharmacist spends a lot of time with me, working out when I am next likely to need medication, and trying to ensure that the medication will be readily available’.
One person we know was told by the “large chemist”, to just ask your GP to prescribe a different immuno-suppressant!
Annie always tries to make sure she has at least two weeks of pills left when she requests her repeat prescription to allow her pharmacist enough time to hunt down a supply.
Do others encounter this difficulty? Perhaps we need to draw the problem to the attention of Roche. What do you think?
Taking your Meds!
Its obvious I know, but it is crucial to take your meds when you are supposed to, and as you are instructed to. › Continue reading
Birdshot logo
If others have skills that they’d like to offer BUS, we’d be delighted to hear about them! Please do get in touch via birdshot@live.co.uk.
Happy New Year to everyone who has registered on the birdshot website and thanks so much for all the support and the enthusiastic feedback that we are getting.
New BUS leaflet
Birdshot Uveitis Society’s first leaflet has recently gone to print and we are due to receive a 1000 copies shortly.
The printers, Docuprint Limited, have very kindly agreed to sponsor the costs of our first leaflet and we are extremely grateful to them for this generosity. We would particularly like to thank Sarah Thompson my account manager who managed the leaflet from start to finish. This is a really helpful and useful form of support and we are truly grateful for it in this economically difficult climate.
We hope to be distributing the leaflet to birdshot patients via hospital eye clinics. Please do get in touch with us if you would like us to send you a supply or you know anyone who would like to receive a copy. Our email address is birdshot@live.co.uk.
Annie
Postscript
Here is a link that takes you to a copy of the BUS leaflet which you can print.
New development
As the body ages so do the eyes and people start needing glasses for reading and driving.
“But now a new technique has come on the market which promises not only to restore our sight but also to make it better than before and get us seeing in high definition. › Continue reading
You are Invited To Attend
On 24 March 2010 at 6.00 p.m. at the Museum of London, Dr Stephen Foster will be talking about Inflammatory Eye Diseases. This is part of a series of lectures about the eye that is being given by Professor William Ayliffe (ophthalmologist) at Gresham College in London. Entrance is free and these lectures are designed for the general public. › Continue reading
Raising the profile for Birdshot
BUS believes that it is important to raise the profile of uveitis in general, and Birdshot Chorioretinopathy in particular so that it is better researched and understood. › Continue reading
Healthy Eating
You’re as old as you eat
Feature on tips for good diet to maintain health as you age, including section on fruit and leafy greens for eyesight. The item suggests a wide range of fruits and vegetables for eye health and includes a quote from Iain Anderson, chairman of the Eyecare Trust.
Mail on Sunday, Mail 2, page 45
www.dailymail.co.uk/health/article-1221070/Youre-old-eat–Our-guide-foods-fight-age.html
