Benjamin Posted March 30, 2010 Share Posted March 30, 2010 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.. Link to comment Share on other sites More sharing options...
ali-cat Posted March 30, 2010 Share Posted March 30, 2010 BenjaminPM Sent.Mr Cat Link to comment Share on other sites More sharing options...
Thebiga Posted March 31, 2010 Share Posted March 31, 2010 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. Link to comment Share on other sites More sharing options...
Benjamin Posted August 17, 2011 Author Share Posted August 17, 2011 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=trueApproval 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.aspxThere is more information from the MS Trust for the anoraks amongst us. [:D]http://www.mstrust.org.uk/atoz/fampridine.jspandhttp://www.mstrust.org.uk/information/publications/factsheets/fampridine.jspandhttp://www.mstrust.org.uk/news/article.jsp?id=4857The 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. Link to comment Share on other sites More sharing options...
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