Real life – Anne’s fampridine experience

Fampridine is currently only available on the NHS in Scotland and Wales. Scottish MSer Anne Kerr shares her experience of the drug

I was diagnosed with multiple sclerosis (MS) in 2002, and my walking and balance had become very poor – as I have severe osteoporosis, I was liable to fall and break bones.

Like many people I sometimes read articles on new wonder drugs with some scepticism and wonder if they work or will they ever be made available. I read the article in the September/October New Pathways magazine on fampridine. The article spent a lot of time bemoaning the fact that the drug was not available in England but the more I read about the drug the more impressed I was becoming, and, if it was available in Scotland, where I live, why didn’t I know about it? 

My first stop was my GP, but he wasn’t able to prescribe it. We then got in touch with a neurology consultant, but we didn’t get anywhere, so we went back to the GP. He contacted a consultant and that led to phone calls with MS nurses at the local hospital. My neurologist finally agreed I could have a four-week trial. The difference was unbelievable. Almost immediately my balance and walking greatly improved, and I experienced no side effects.

One other benefit was that I stopped falling over and breaking bones. The only downside was that you are assessed at the end of the trial to see if you have improved and can be prescribed ongoing treatment, and there was a gap between the end of the trial and receiving the delivery of the prescription. The drug leaves your system almost immediately, and you would not believe how quickly you deteriorate but, on the positive side, how quickly you pick up again when you start taking the tablets again.

The moral of the story is, read the articles, you never know when one might actually apply to you and get moving on chasing NICE to make Fampridine available UK wide.