Fampridine trial thoughts

I’ve just come off my trial period of Fampridine and I’ve decided to carry on with it.

Fampridine is a potassium channel blocker which ultimately means that messages can travel along nerves more efficiently. It’s prescribed for MS patients like me, with a walking disability.

It’s something I would take alongside the other medications I’m ready on and it’s not currently available in England on the NHS. So because I’m English and not Welsh, Scottish or Northern Irish and at the mercy of not-so-Nice and their judgements, I needed to perform a cost-benefit analysis before I made the final decision. I was quoted a price for the medication before I took up the offer and, while it’s a price that won’t ruin me financially, it’s still money isn’t it? And with the cost of living currently rising I do have to watch the pennies.

I think if I’d carried on driving 20 miles a day to work and back, I would have considered cutting my already part-time hours back even further. Post-covid I’ll be working from home so it’s a cost I can absorb.

The success of Fampridine is evaluated by how much walking speed increases when you’re on it, but if, like me, you’re not particularly slow in your first 50 metres, how well it works won’t show up if it’s assessed that way. For me, it’s how quickly that speed drops away; how quickly I fatigue. Also, the more subtle changes that you don’t notice until you stop taking the meds. About 30% of English MSers who trial the drug extend their prescription beyond the trial period

I took Fampridine to see if it could increase the distance I could walk, or at least give me the confidence to walk a bit further. I’ve always been a big walker and I’ve blogged multiple times before about this. So, over the 4 weeks of the trial, I’ve been out almost every day just before dawn – the best time of day – and I’ve plotted and measured the length of the route on Google Maps afterwards, making any additional notes in a journal I keep on my phone.

I’ve noticed that I really shouldn’t walk much further than half a mile at a time or I can get severely neuro-fatigued, particularly deeper into my route; my legs stop working, and my back refuses to hold me up (thank crikey for walking sticks!). This really isn’t a pleasant state to be in, particularly if you’re not close to home, so walks with benches are an absolute must.  I’ve planned various circuits that allow me to join the dots of benches and convenient places to recharge. Walking at dawn also helps – there aren’t many people around taking up space where I want to crash-land.

When I perhaps don’t feel as good, I have a basic circuit close to home, that allows for quick escape routes, a bit like sliding down a snake in snakes and ladders. When I feel stronger, the more adventurous walks will often have a goal in mind such as exploring a new neighbourhood, taking pictures of something cool, or staying a while in an area I particularly like.

The longest distance I’ve managed on Fampridine is 4.6 miles. When you consider that I couldn’t really manage more than 2 miles before the trial, you can see the improvement in my confidence if nothing else. At the moment, I don’t even want to attempt a distance of more than the 2 miles I did the other day which I felt very much was my limit. Now, I need to rest and collapse into my sofa after 2 miles; on Fampridine I can stand for a while and do things like get breakfast ready, make a pot of tea, and empty the dishwasher straight after a 4 mile walk.

So, here are the pros and cons so far:

Pros

  • Fampridine seemed to increase the distance I can walk. I managed a maximum of 2 miles without Fampridine, and a maximum of 4.6 miles with.
  • Fampridine gave me the confidence to try and walk a bit further than I could before, and the confidence to make life more interesting by trying new routes. If you consider shopping trips and forthcoming holidays, you appreciate how the extra distance will become a necessity.
  • Fampridine gave me a more assured gait and tripping and stumbling, while not entirely absent, were much less frequent while trialling the drug.
  • My early morning clonus stopped while on Fampridine. This is something I didn’t even notice had happened until after the trial when it returned with a bang
  • Fasting for 2 hours before and after each tablet means I can manage my diet better. I generally took my tablets at 10am and 10pm, so I was practically nil by mouth between 8 and 12. Normally I’m often tempted to graze or give in to a snack in this time.
  • After the trial period, I’ve noticed I have difficulty standing for extended periods. My knees can give way one-at-a-time like Bambi on ice, with no warning.

Cons

  • There’s no real increase in walking speed while on Fampridine. While I’m not walking-impaired enough to be snail’s pace over the first half mile, I’m not like Speedy Gonzales either. I would have liked to feel like I was getting a little extra out of the exercise in terms of speed but I’m probably burning more calories just by walking further.
  • The cost. I’m no longer considering cutting my work hours post-covid, and I have a rainy-day fund for this sort of thing, but my hard earned cash should be spent wisely so is this drug worth it?
  • Back pain. I had naturally assumed this was due to my broken back, but it’s listed as a side effect and has all but disappeared since the trial ended. It’s not just the odd twinge either – I needed some strong GP prescribed painkillers for it, so if I go back on the fampridine, while I might have to take the pain pills again, I will, at least recognise the pain for what it is …and what it isn’t.
  • Fasting for 2 hours before and after each tablet can get in the way of life and needs to be carefully managed when it comes to social events. I don’t feel able to have a cup of tea in the 4-hour fast, for instance. Seeing as this, in the evening at least, can coincide with settling back to watch something on TV, you will appreciate how it can impact a tiny bit on my quality time.

Considering the pros and cons, I think the pros outweigh the cons, but it is tricky because some of the differences between being on the drug or not being on it are very subtle and I didn’t notice them at all until I stopped taking it. Also I’m wary of feeling a bias towards taking it: am I unwittingly talking myself into it? The only real con I can see is the back pain, which can get pretty severe, but that’s what painkillers are for and if I know what’s causing the pain, I wonder if I might take them less often.

There are other side-effects listed in the leaflet inside the medicine box, and I think my worry is that these might kick-in at some point in the future. Apart from the back pain, I did have a very upset stomach one day on the med and I put that down to something I’d eaten, but it was one day, and it doesn’t mean that other side effects will pay a visit at any point.

Another quite important point is that some people notice the benefits of the drug in a matter of days and some take a bit longer. I reckon most people in the 30% of MSers who notice a difference are like me and notice an improvement over a 4 week trial period rather than relatively quickly, but I’ve also heard it can take 6 weeks before a benefit is noticed. Whether that’s due to drug efficacy, the neurologies and symptom sensitivity of individual patients, or, a gradual dawning that a subtle improvement is underway, I don’t know. Maybe all 3. Maybe more than the 30% notice a benefit but decide the cost involved isn’t worth it. Maybe I have benefits still to be unlocked. Who knows?

So in summary, it was a toss up between feeling confident on both feet against something that gives me back pain, costs money, and forces me to timetable my food and drink. It was a no-brainer for me, and it fell on the right side of the quality-of-life scale and, knowing me I’ll try and turn the cons into pros.

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