Will Fampridine improve my quality of life
Fampridine , trade name Fampyra
The physiotherapists at Queens Square neurological hospital offered me Fampridine in the summer of 2017. I knew that Fampridine also known as Fampyra could improve my walking speed. Sadly it doesn’t make the process any safer. None the less I reckoned it was worth trying out.
Will Fampridine improve my quality of life
When I got back home I tried to find out as much as possible
- The bad news, it only works for about a third of the people who take it.
- The good news it can reduce many effects of MS.
- For some people it’s as if the MS clock is turned back a couple of years.
What has changed in the last two years
My mind went into overdrive. Okay there is no one big thing but there are so many little things I have noticed. My finger tips are now numb. It takes a huge effort to stand on my feet without using something to help my balance. There are masses of other little things but I won’t bore you with them.
Will Fampridine improve my quality of life
Fampridine could improve my walking speed
So I was offered Fampridine in June. There was just one small problem. I must wait until I had finished the MS-SMART trial in November 2017 🙁 . As soon the 96 weeks of my involvement in the drugs trial finished I had my first Fampridine clinic appointment. I didn’t know what to expect. I already knew the consultant so the first few minutes of the appointment was catching up on old news.
Down to the nitty-gritty
I was told
- Famyra is taken as a ‘slow release’ pill twice a day.
- There must be an interval of 12 hours between each pill.
- You cannot eat for at least an hour after taking the pill
- It must be taken on an empty stomach.
‘Oh crikey this is going to be complicated’ I thought to myself.
Next question; when is the best time to take the pills?
At home The Wife and I eat supper at about 8.30 in the evening. We decided I will take my pill at 7.15 every morning and evening.
The crunch
The drug is supplied by Biogen Idec. The first four weeks is a trial and they supply the drug. If the trial is successful I then continue to receive the drug on an NHS prescription. So how is success measured? Success is measured using the ‘Timed 25 Foot Walk’ (T25-FW).
Two weeks later
I attend the physiotherapy clinic again but before I am given the Fampridine prescription I must do the T25-FW. I did it twice and the average was 21 seconds. Soon I’m on the train back home clutching my precious pills I was determined not to think about the success or failure of the trial.
Taking the tablets
I got home and excitedly set two alarms on my mobile phone. That night I took my first pill.
Is it going to be effective? I should know within a couple of days.
How will I know? I must wait and see.
The only way to avoid any disappointment was to convince myself this was just another pill.
I will tell you how it affects me in the next post meanwhile I’m practising walking with my two wheeled walker or zimmerframe ….
December 2017
Ah Fampridine/Fampyra.
Thank you for the checklist of prescribing cautions – I had not seen the food related ones before.
The *vital* one that was missing is that a potassium channel blocker such as this has the side effect of lowering the “seizure threshold”
That actually doesn’t matter until it does matter. Then it matters a lot.
I had my, first ever, seizure last year, ceased breathing (ie died) and was brought back to life by the CPR of Ros, my wife.
Just saying….
Hello David,
I was given the impression by the consultant that providing the rules are obeyed then chance of seizure is zilch. ie stick to 12 hours between pills, fasting for at least one hour after taking pill and take it on an empty stomach.
i take mine at 6.45 every morning and that fits in well with my eating pattern.
More info to follow soon, seems to be OK for me.
Great news – I hope it works for you! It did for me and makes a real difference. I didn’t think this drug has been approved by NICE. I get mine privately as a result and it is expensive.
Hello,
So far so good, walking test with a Zimmerframe on Friday. The drug has been approved in England but not too sure how distribution operates. I get mine through Queen’s Square in London but will find out more on Friday when I have my test. I have to go upto London to collect the drugs. It has certainly improved my quality of life
I hope it works for you Patrick. I have to admit that I’m a little jealous. i wish there were treatments and advances like this for people with MND.
Have a really great Christmas and perhaps we will get to bump into each other on our TravelScoots some time in 2018. I’m going to be finishing the https://twentysixmiles.co.uk/ fundraiser next year. getting divorced slammed the brakes on it for a while but now I’m a free man there’s nothing stopping me.
Miles 🙂
Hello,
Sounds like its been a tough year but I like the idea behind the twentysixmiles project. I’ve just bought a 2nd hand DSLR camera Sony 3000 but not had a chance to use it cos of the weather. I’m effectively housebound. Talk soon and don’t get upto too much mischief
Didn’t work for me, but I seem to be resistant to any success with everything I’ve tried so far!!!!
I’ve been talking Fampridine since June and it has definitely improved my mobility. It was dramatic in the first couple of months but due to several severe UTIs which are resistant to all the antibiotics I’ve had I have now had to stop taking it for 2 weeks to ensure that the ITI’s aren’t a side effect. The UTI is also delaying my Botox so I’m feeling pretty miserable now. I’m having to work from home for now but I’m hopeful that this new course of antibiotics will clear up the UTI and I’ll be back on the Fampridine and back to work in the new year.
Hello,
Sounds like a very tough few weeks. Antibiotics have definitely lost their potency and with Botox I guess infection is an ongoing hazard. I know of more than one woman who is trying really hard to avoid catheters for this very reason. I’m sure it will all come right in the end.
Keep a smile on your face
This is exiting! Look forward to your next blog post!
Hello,
Exciting times indeed. Now it has been authorised by NICE people need to know.