Three weeks of taking Fampridine
Friday, 22 December, I think that date will be etched on my memory for many years. Three weeks of taking Fampridine. I knew it’d helped me but the icy test was going to be measuring my new walking speed. Had Fampridine increased my walking speed enough for me to receive it on prescription?
Three weeks of taking Fampridine
I already I knew I would be using the dreaded two wheeled Zimmer frame for the timed 25 foot walk. I could see the white line which I had to walk along. The physiotherapist, called Sara, told me where to stand and pointed out the tape marking how far I had to go. She said I could start in my own time. Three, two, one and I set off. Every step I took I had to make sure my left knee did not lock. Make sure that I did not go too fast and remember to concentre.
I completed the first length successfully
I didn’t fall over. My legs didn’t get in a tangle. My left ankle did not buckle, something that often worries me. A good result but …
Now I had to turn around and do it again
I lined up on the mark. Once again Sara said, ‘I could go in my own time’. Maybe I was getting a bit too confident. After about six paces I felt a wobble. I wasn’t pushing the wretched Zimmer frame evenly. Suddenly I was swerving to the left.
I said to myself ‘Patrick, slow down. Concentrate. Take it calmly. Just straighten up. Now follow the line and think clearly’.
Without any more problems or accidents I reached the end. I knew I had given it my best shot.
Did I or didn’t I
At the end Sara said ‘Your walking speed was 50% faster than three weeks ago’
I was astonished. Okay this time, I really had gave it some welly but I had no idea that I had gone that much faster. Practice alone could not have made this much difference.
Sara told me I shall get a prescription for Fampridine. She added ‘You will need to come up to Queen Square every 10 weeks to be assessed and only then will the prescription be renewed’.
National Hospital for Neurology and Neurosurgery
Before she gave me the precious prescription I asked her an important question.
‘Why can the National Hospital for Neurology and Neurosurgery give me a prescription for Fampridine even though NICE have not approved it?’
‘The hospital pay for it and not the NHS’. She went on to say ‘They will only issue the drug if you show a significant increase in your walking speed. We realise how important walking is to people who have MS’
Hearing that made me realise how lucky I am to see MS consultants in London. It was the same consultant who had suggested trying out an FES. Without an FES I would definitely be in a wheelchair.
I made my next appointment for March the eighth and went back home carrying Fampridine, my early Christmas present. This was my biggest day for a very long time.
December 2017 also shipped you are a you are a a a a
I forgot to mention that the legal status of the off-label prescription may be different in Australia, where I live.
Also the, known, side effect of 4AP is a lowering of the seizure threshold. Three seizures later I am off it.
Incidentally what is a FES?
More to the point congratulations Patrick.
As Sara made clear your script *depends on* ambulation – because it can be measured.
As the Barts MS Research blog (http://multiple-sclerosis-research.blogspot.com/) makes clear – search #thinkhand – post ambulation metrication is the key, That is why I am such a big fan of the Nine Hole Peg Test (9HPT)
Beyond, or without, that my option was the “off label” prescribing of 4 aminopyridine (4AP).
4AP is the active ingredient in Fampridine, and in the preceding heart medication which was also a potassium channel blocker.
This “repurposing” of a med needs no Phase 1 or Phase 2 trials and, thus, is quick, cheap way for Pharma to keep making money when the patent is expired.
An FES is a functional electrical stimulation. Best to look up this link https://www.mstrust.org.uk/a-z/functional-electrical-stimulation-fes
I am thrilled to have a prescription for Fampradine. It really has rolled my MS back by 2+ years. I think an important point with Fampradine is to follow the instructions precisely. It is a slow-release drug that must be taken every 12 hours and food intake stipulations must be adhered to.
The Barts #ThinkHand idea is very important. As far as I understand the idea is to make medical trials more inclusive as well as to raise awareness of problems that can arise with advanced MS that had previously been ignored. It all came out of the MS ASCEND trial of Tysabri. The original trial was canned but reexamination of the results showed that Tysabri improves control of the hands for people with advanced MS.
Well done Patrick. Whilst I am pleased for you it is more evidence of the postcode lottery though. I had a trial of Fampridine at the QEH in Birmingham and showed a good improvement in walking speed (albeit not 50%). I was told by my neurologist in no uncertain terms that the hospital would not fund further supplies and nor would my GP (apparently Birmingham North East PCT is notorious for not funding ANYTHING on a discretionary basis). So for the last 2-3 years I have been paying £2,400 a year to get it. On the odd occasion when I have run out or forgotten to take a couple of doses, I very quickly notice how much my walking deteriorates. I am fortunate that I can afford this but I am sure many people cant and it doesnt seem right that the key determinant is where you live and not how much you need it.
Not so much a postcode lottery as a hospital lottery
It is a medicine that is effectiVe within a very short space of time and also ineffective within a short space of time.
The fundamental problem was that NICE said it is not cost effective. You can walk faster but not more safely. They did not consider the effect it has upon a person’s quality of life.
Congratulations Patrick, what a fantastic achievement, I am thrilled for you. Have a wonderfully productive, healthier New Year.xxxxxxxxx
Things are looking rosier and it could possibly get even better. 🙂