Forum

Fampyra

After seeing my ms nurse I am considering Fampyra. As this would be on a private prescription and not cheap I am curious of peoples experiences using it. The cost would be worth it if it made a significant difference.

Angelicali

I took it on a private prescription for just under 5 years. It made a big difference to my walking ability from day one. I had no side effects from taking the drug except of being £200 worse off each month.

I stopped taking it about 6 months ago.

The reason I stopped was because having secondary progressive MS I knew that although my walking would be better I was still progressing at the same time of taking the drug. About 4 years into taking it my walking whilst taking the drug had probably got to a point where I was as bad as I was before I started taking it. I was in effect paying £200 a month to see no improvement from when I started. It was at this point I took the decision to save myself the money and admit that to be safe and able to get about outside a wheelchair was my best option.

So, I stopped taking the drug, saving myself a few thousand quid per year, and invested in the best carbon fibre chair I could find.

I don’t regret the time on the drug, it gave me 4 years of benefit at a time in my life that I needed to be more walking than wheeling.

Do lots of research and make the best decision for you and your situation.

Charlie

Thank you for sharing your experience.

Hi Angelicali

I’ve got SPMS and have been on Fampyra since Jan 2017. I had a month free trial and it made a little difference to my walking speed but, more importantly for me, it stopped me falling over. I have left foot foot drop. Haven’t noticed any side effects.

I’m now a full time frame user inside and scooter user outside.

My neurologist suggested that I could try stopping taking it or just take one per day to see if any difference as my walking has deteriorated over the years I’ve been taking it. Fampyra might have slowed it down though.

1 per day was enough if I wasn’t out and about but 2 is better so I’m back on 2 per day the recommended dose. Taken 12 hours apart on an empty stomach. I take at 10am/10pm.

I qualify for PIP Daily living allowance at standard rate so the £ pays for my prescription with a little left over.

Tablets are delivered to my work. Just order and pay over the phone.

I’m sureyou’ll be offered a months free trial.

My neurologist is annoyed it isn’t available on NHS as it’s relatively cheap and if it keeps people walking and not falling it would be better use of NHS ££ than having to spend in aids and injuries.

Hope this helps a little.

Jen

Thank you

I was on the trial for it but only lasted 1 day on it. I didn’t like the effect it had on me. But I know 2 people on it and say it’s excellent and wouldn’t be without it. Go for the trial and see how you get on with it. It could be great for you. I just chickened out of it.

The Barts Blog is worth reading. https://multiple-sclerosis-research.org/2015/01/clinicspeak-fampridine-trial-results/ https://multiple-sclerosis-research.org/2017/02/clinicspeak-researchspeak-is-long-term-fampridine-good-or-bad/