2nd Fampridine drug holiday

Fampridine drug holiday is a planned break from taking Fampridine under the supervision of the MS walking clinic. Its effectiveness can then be assessed.  I receive fampridine from the UCL walking clinic in Queen Sq London and I first started taking it Christmas 2017. The MS was making my life difficult especially walking. I needed to use a walker. It also helps with other basic day to day activities.

Fampridine is a drug that helps restore electrical signal transmission in nerves damaged by MS and therefore stimulates the muscles more effectively.

1^st drug holiday

I had a Fampridine drug holiday in 2019, it lasted two weeks. The problems were noticeable within 24 hours the starting. My balance deteriorated, and walking was slower The change that disturbed me most of all was a sudden difficulty in doing a sit-stand exercise from a chair. Not only was it harder to stand up but I felt much less control when I sat down. I would even find myself sitting half on and half off the chair.

When the holiday was over the benefits of the Fampridine started to kicked in as soon as I took the first pill. Within a day or two everything was back to where it had been before the holiday.

2^nd Fampridine drug holiday

In June 2026 the clinic wanted me to do another drug holiday in the summer. For various reasons I did not think it through properly. Stopping the Fampridine for just 1 week during a heatwave in August was a very silly idea but that’s what happened.

Fampridine drug holiday story

MS now affects me badly and the clinic wanted proof that the drug is still effective. Well it really does help me as you will find out from my story of living without Fampridine. The requirement is 1 pill every 12 hours. Not taking one for 24 hours and I notice a deterioration in my walking and balance.

Daily problems

Some really simple activities suddenly become a bigger challenge, one was balance. I do intermittent self-catheterisation to empty my bladder. Now I could only fully insert the catheter using both hands when standing up but I still needed to hold a grab rail to stop myself falling over. Leaning against the bathroom wall certainly helped. Fatigue makes all the problem worse.

Pulling up my shorts when getting dressed or after going to the loo was another nightmare. Quite often my good wife had to help me. The problem was the same, I needed three hands but like everyone else I’ve only got two

Walking

Sadly walking is getting harder because of bloody MS but during the holiday it was almost impossible to walk. I did try but my legs did not want co-operate. Standing up straight was very difficult, I tended to bend at the stomach and knees. Foot drop and leg drop were a total nightmare and I was terrified of falling over.

Other problems

Holding and using cutlery, even the adapted cutlery was more difficult. I was forever dropping things but luckily nothing breakable. Getting in and out of bed was much more difficult. I did not leave the house at all that week, not even to go to the bridge club, I simply did not trust myself.

Day five, loss of balance

I was patiently sitting on my mobility scooter in St Pancras station waiting to catch a train back home after my Botox procedure. I had just sent a WhatsApp message and as I looked across the station I felt my self wobbling. Next thing mobility scooter was on its side and I was on the floor. People picked me up, put the scooter back on its wheels and placed me on the seat. That little accident definitely shook me. Thankfully no lasting damage but pride and self confidence took a temporary hit.

The end of the holiday

The original plan was visit the clinic in London when my holiday finished but it was far far too hot. Instead my wife filmed me doing a 25 foot timed walk, It was emailed to the physiotherapist at Queen Sq and the time compared with the same walk before I started the drug holiday. The difference proves the effectiveness of Fampridine. I have no idea of the relative times but Fampridine definitely helps me as you can read from my real life experiences. The drug holiday problems began to disappear as soon as I restarted Fampridine and it was all back to normal within a couple of days.

August 2026

Associated article

I’m a lucky guy Fampridine works for me

First Fampridine drug holiday

 

 

 

 

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