I had been taking Fampyra for two years. I was walking a few steps, transferring, driving etc. Didn’t need caters. On November 11, last year, I had a seizure and woke up in hospital unable to move. I was confined to bed for four weeks being treated for epilepsy until my neurologist (privately) came to see me. He immediately diagnosed that I did not have epilepsy and that the seizure was a side effect of Fampyra. He confirmed that he no longer prescribed the drug as other patients had also suffered seizures. He advised intense physio therapy was the only treatment. I remained in hospital until mid March. Rehab managed to get me moving, and I have an hour of physio daily. I can now stand but cannot, yet, transfer. I need two carers in the morning for showering and dressing. Another carer at bedtime. Still can’t get into a car.
Your story is so sad John. Fampyra seemed like such a miracle drug when it was brought out, and it must have felt like one too, until it became a nightmare.
I wanted to trial it but my neurologist told me it wouldn’t work for me. In retrospect I’m so glad I didn’t go on it.
I was put down for a Fampyra trial, just before my PCT (along with all the PCTs in the South of England) decided that they would not fund it. Neuro was quite happy to write me up for it, as a private script!
The bad news stories were already starting to hit the various forums in the US, so I decided against it.
The one thing that always puzzled me was that if it helps a nerve impulse get through to the legs, it must also help impulses get through everywhere else (no drug could be so selective).
Good marketing (first month free and all that). shame about the results.