Forum

Fampradin

Hi all. Does anyone know the status of Fampradine? I used the drug a couple of years ago and it was truly amazing. I could walk again!! Unfortunately I couldn’t keep up with the £180 a month costs. I can’t find anything to say that NICE have approved it (God knows why not). Does anyone have any info?

I tried it too and likewise couldn’t afford the monthly costs but biotin has done the same for me as frampradine, my walking is amazing! They yearly cost of biotin is about the cost of two months frampradine. The big advantage is that if you’re lucky it puts right other things as well! It takes nine months to see the full effect but somethings happen much quicker. One of the people on this forum has improved beyond measure, her fatigue has improved too. I can’t recomend it highly enough Nina

Hi Nina my neurologist has suggested I try biotin as my walking has deteriorated in a very short time, so that is really encouraging. How long have you been taking biotin and how long did it take to notice an improvement? Thank you Sue

I wrote to NICE many moons ago asking why we had to pay for this drug. They sent back a huge calculation to justify NOT allowing it for free…bit like e=mc2 but far more complicated (and inaccurate I believe) and extremely costly. I wish they’d look at it again…you almost need a recognised organisation to lobby on our behalf …oh hang on…

On biotin too and that may well be the best chance/choice we can find for ourselves…would certainly recommend it but remember it is no quick fix! But the rewards may be worth the wait…

Best of luck

Hi Sue,

I have been taking it for over a year but I’m not a good example as I had septicaemia and had to stop it for a couple of months, then just as I was starting to see a vast improvement in my walking. I was diagnosed with lung cancer and I had to stop it once again because of blood tests…by this time I was basically back to square one! I started again in September and little by little it’s slowly starting to improve. Hope that helps, it’s slow going but so worth it in the end…I believe how it helps and how much it helps can differ from person to person!

Take Care,

Nina x

Hi Nina, Thank you for your reply. I walk with FES and a walking stick as I have foot drop and my right hip no longer wants to lift. After a very short time I find myself at EDSS 6. So far the lesions have only been found in my spine but due to a sharp deterioration I am having more MRI’s at the end of the month. I do hope that you have a healthier 2018 and that your progress continues. Sue x

Thank you very much for the replies