Just wanted to post an update on testing this medication.
Apologies for what is likely to be a fairly lengthy post, but I sincerely hope it’ll be useful to some (?):
Went to see a private (hideously expensive) Neuro on 30.7.13 to see whether Fampyra would potentially be helpful. Through this discussion, I was assessed as likely to achieve some benefit from this treatment, so a prescription for a free trial was sent off immediately.
Initially, I did a 60metre timed walk twice-a-day, covering various terrain (indoor, outdoor, flat, sloping) for 3 weeks to get a decent benchmark result to compare Fampyra to.
I’m now SPMS, have been dignosed for 14 years and don’t take any other medication (having tried many over the years without any success!), have ‘drop-foot’, voice problems, intention-tremor in the right hand/arm, dizziness, etc. etc…
The Fampra arrived very promptly, but I wanted to complete my ‘benchmarking’ first, so I didn’t actually begin taking the medication until 17.08.13.
Almost immediately, I noticed a marked improvement in walking-speed (about 30%) and ‘drop-foot’ was much better. This improvement lasted about 10 days.
However, after the initial 10 days (…and almost euphoric effect it had) this improvement started to decline a little. It definitely continued to improve walking, only the effect started to lessen and there was a decrease in the benefit it was having for me.
By the end of the 4-week trial, my gain was certainly still there, but had become so slight, I honestly thought I could achieve the same myself just through exercise (…possibly wishful thinking, but that’s how it felt).
It’s only been 3-days since I completed the trial, but in those 3-days, my ‘drop-foot’ has returned with a-vengeance, walking is slower and more difficult than before (…leg is stiffer than ever), balance is now so poor that I have to hold-on to furniture just to get around the flat. I have also had a resurgance of the neurological pain I was experiencing on a daily basis for several years. Sincerely hoping this is just temporary while I get this drug out of my system and I’m soon back the way I was before the trial (…poor, but bearable ).
I’m so glad that I was at least given the opportunity to try Fampyra, but personally it’s an awfully big financial committment for such a slight gain. I’d say the improvement I saw was worth about £40 per month as side-effects may also have to be treated by further medication.
For me, I’ll stick to the FES for now!!
Hope this has been useful and I’d be more than happy to answer any specific questions that have occurred as a result.
Do please remember, this is purely my personal experience of Fampyra and it may be much better for others!!