3,4 Diaminopyridine and MS

[Benjamin]

I don't know if there are any members with MS, but Mrs

Benjamin has for the last nine months been taking this medication in

tablet form as part of trials to assess it suitability for use by MS

sufferers in France.

Originally developped to treat another

condition (Lambert-Eaton Syndrome) it has been found to be of some help

to some MS sufferers some of the time. It's not a cure

but it helps with balance and poise and now enables Mrs B to walk in the

garden, albeit with a cane, and to generally move around a lot more

easily. In doesn't do anything else with other symptoms but certainly

gives a psychological boost to counter the progressive decline that many

MS sufferers see.

The trial has been concluded in the UK (where

the consumer name of Fampradine has been given to the treatment).

It's developers, Biogen Idec, are waiting for a licence to manufacture

(probably due at the end of this year) and then it will be up to NICE to

consider its cost/benefit suitability for release through

Neurologists/GPs.

There appear to be few side effects although a

tingling sensation in the fingers and lips together with the possibility

of insomnia. You get used the to the first and by taking the last

tablets of the day around 4.00 pm the insomnia is easily countered.

We

are told that the cost of a month's treatment is of the order of €120

so relatively cheap against some medicines.

If anyone wants any

othet informatio then pm or email.

This message is also in the Health Section..

[ali-cat]

Benjamin

PM Sent.

Mr Cat

 

 

[Thebiga]

I have MS myself and know how bad it can be at times and everyones is different and am thankfull that mine is not as bad as your wifes.

I take many tablet medications to help with the neuro pathway pain and also a daily injection of Copaxone (€1000,00) and this I think has done what it has supposed to do and slowed down the onset of more attacks.

I did have Beta Interferon injections before the copaxone but this raised certain things to a dangerous level in my liver so had to stop.

Anything new they come up with is another step forward to one day finding a cure to this menace and I wish your family all the luck in the future. If it helps to talk to another MS sufferer I am only a PM away.

[Benjamin]

An update. Fampridine was turned down by the European Medicines Agency in January of this year. The good news is that this decision was reversed upon appeal by the European licence holders (Biogen) on 27 July. Her is some information from the EMA.

http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/002097/human_med_001432.jsp&murl=menus/medicines/medicines.jsp&mid=WC0b01ac058001d124&jsenabled=true

Approval for use in the UK is now required from NICE. A decision is expected in mid-September, although this seems hugely optimistic to me.

Fampridine is already being prescribed on what is known as a named patient basis in the UK and supplies are being brought in from the American patent holder.Here is some information from the American MS Society.

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/medications/4-aminopyridine-and-3-4-diaminopyridine/index.aspx

There is more information from the MS Trust for the anoraks amongst us.  [:D]

http://www.mstrust.org.uk/atoz/fampridine.jsp

and

http://www.mstrust.org.uk/information/publications/factsheets/fampridine.jsp

and

http://www.mstrust.org.uk/news/article.jsp?id=4857

The medication, if approved by NICE will be known as Fampyra.

At a meeting today with the Neurologist teating Mrs Benjamin he has made an accelerated application" to the local Primary Care trust (PCT) for permission to prescribe. This dacision is expected to take three months.

So get out there and badger your Neurologist if you have MS or a similar condition.

ps I hate to think what these fonts will look like as they seem all over the place on my screen.