Got fampridine in the pharmacy today after waiting a week for prescription. It’s for 3 weeks trial. The girl there told me about eating nothing before an after taking it for an hour at least. Thing is I really don’t want to go ahead with the trial after reading all the posts here about it. My neuro said it’s perfect for me but the side effects look scary to me. I thought I was doing good but have a virus for 2 weeks,got coldsores and tired all day. The girl in pharmacy said I’m the 1st person they have given it to so couldn’t tell me anything about it. From the posts here all I read is bad things about it. Don’t know if I’m right or wrong to not take it. It may help me but might not and might make me worse.
Aw Jimmy. I know. I asked about it when it first seemed like a miracle worker. And being fair to the drug, for some people it’s been brilliant. (My neurologist decided immediately that it wouldn’t work for me.)
From what I’ve read, there are people who respond to the drug, and people who don’t. You’d know which you were quite quickly. If it doesn’t work, you have to stop as soon (and as safely) as possible.
Because some of the responders to the drug have found that when they stop Fampyra, their walking deteriorates to a state of being worse than before the drug. Ie, they’ve found in the short term it helps, but long term damages them. Or maybe just when they stop their mobility worsens. I’m not sure.
But so long as your access to the drug is secure, ie not part of a trial, then you could start?? I assume if you’re a responder, you can then continue on the drug? If not, I wouldn’t do it.
Or maybe don’t start when you already feel crappy. Wait until you’re not suffering the virus.
Ooh it’s such a scary decision to make. I’m with you in spirit. Ready to either take the risk, or not. I’ve usually been on the side of the risk takers, but with Fampyra, I just don’t know!
Whatever decision you come to, please, please let us know what you do, your reasoning, and the results. I really don’t want to encourage you either way, because it has to be your choice alone.
Sue
Sue, that’s exactly what I’ve read the that if I respond it’s great but long term it can cause damage. 1 in 3 respond to it apparently. I think I’ll get it free if im a responder after 3 weeks. My heart says not to take but my head is curious to try it. I’m so scared as my walking isn’t too bad,use 1 stick to walk. I read nearly all the posts here from years ago and mostly bad comments from people.A few good 1s too. I’m going to take a few days to get over this virus and decide then. It’s nearly the hardest decision I’ve had to make. Thanks for your help sue, I’ll let ye know what decision I’ve come to and how I get on. Jimmy
Hi Jimmy,
Top tip, your title would have been better as Fampridine. I nearly didn’t read it. Also if people want to search for it, as you did.
I’ve got SPMS diagnosed 1998. From about 2015 my walking was getting steadily worse and walked with a stick and used a scooter when out and about. I’d tried a toe off and FES neither worked. Neurologist suggested Fampridine Jan 2017 and I got a months free trial.
After the month saw the neuro again. My walking speed had got a bit quicker but it did stop my weekly falls. As it’s not approved by NICE it’s a private prescription for £189 so it was a medical and financial decision. Decided to go ahead. I get mine by post once a month.
Not sure how much it was helping so a year later I told neuro, he suggested stopping for a while. When I stopped my walking was so much worse, I really struggled. So I resumed taking it.
The thing I don’t know and can’t work out is would my walking have got worse anyway? I still don’t fall down so that is a huge plus.
As you said difficult decision, let us know how you get on.
Jen
Jen, from all the posts about it i hear the same thing about walking way worse after stopping it but is fine again when its taken again. Professor g had something about whether it sped up progression or not but no definite results from the study. Responders respond and keep responding is what they say. I use a stick but i can walk a little bit and want to hold onto this for as long as i can.Thats the fear I have that I will be dependent on a drug to walk but could be damaging me. Such a tough decision. I must try change the title if I can. Thanks for your experience of fampridine and it’s good that you are not falling anymore. That’s the question I have is will it make my walking worse or is it just ms doing it. Jimmy
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Hi Jimmy,
Great, you managed to change the title so may get more replies.
Yes, huge decision. For me in retrospect think I wouldn’t have started taking it as walking speed was only marginally quicker and could have just been a good legs day.
See how you get on while you’re on the trial.
Let us know what decision you made.
Jen
Its such a huge decision and unexpected as I had no idea id be offered a trial. I was having a crazy day and said I’d do it. I regret it now as I feel good these weeks. I was having a bad day on the trial day,my walking was slow. I have the box of fampridine here in front of me and I don’t know can i just not take them. I don’t want to do it now. Do I have to tell them I’m not doing it. My mind is telling me not to do it. I might regret it too. Tough decision to make. Thanks jen Jimmy
Jimmy I have been taking it for about 4 years, through a private prescription @just under £200 a month, cost price for the drug. I did the month free trial to start with and my decision to carry on taking it and paying for it was a tough decision. I was SPMS, was about about 20 years into having MS and my walking ability was getting to the point that I was so slow and unsteady I thought that I might as well give it a go to see what all the talk was about. My Neuro did all the pre tests, of how quickly I could walk 25 meters and then asked all the questions about how it felt etc. I was then given a months supply and about 2 weeks into the trial I went back and re did the tests. My speed had increased 25% and my balance felt loads better. OK I still couldn’t run a marathon, do all the normal things etc but it was clear to me I had improved. 4 Years down the track, £10k worse off, I am about to have a conversation with the same neuro to come off the drug, why? because I personally think over the 4 years in question my ability to walk at the same speed I did 4 years ago has reduced greatly. When he re tests me on Tuesday I fully expect to be worse than before I took the drug. Once he confirms that I will stop paying £200 a month and revert to my chair for getting around. I knew it would come some day, I have managed to make 25 years not in a chair so to be honest this is 24 years longer than I expected than when I was first diagnosed in the 90’s. The impossible question to answer is “what would I have been like had I not taken the drug at all?” I will never know the answer to the question, if it was possible to know this I might have made a different decision 4/5 years ago. Looking at the posts on here, many people mention other factors such as side effects and possible heart concerns. I am pleased to report I have seen no issues. taking the drug 12 hours apart at the same time each day becomes second nature, if I miss a day I certainly can tell I have missed one, so I am very confident it is doing some good, at the moment however I personally don’t think I am seeing enough to warrant continuing for any longer, it is as if it has certainly helped to increase my speed but my walking decline was progressing and will continue to decline where I will be paying £200 to sit in a chair so what’s the point. Now I am in a good space to say thanks but no thanks, and move on to the next part of this progression. It is such a difficult choice to make and I am afraid to say you will not be able to get definitive answers to the questions you clearly have, this is part of the reason why the drug is not available through the NHS, with NICE approval, it is not a drug that will work for everyone. Hope you make the right decision for yourself and your circumstances/situation, it is not an easy decision to make. All the best Charlie
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Hi again Jimmy
If your head is really saying ‘don’t take the drug’, then don’t just now.
I assume you can take another couple of weeks to think about it before making a definite decision.
Talk to your friends and family. Write down the pros and cons (those that you know about as well as the suspicions).
Just try writing down how you really feel about it. Do you have trust in the drug? Are you willing to take the gamble that it will help and not ultimately have been a bad thing? Or do you think (assuming you are a responder) that the gains will outweigh the potential losses?
If I’d taken the drug when I asked about it, and then ended up using a wheelchair 95% (or more) of the time, I’d have blamed the drug. I didn’t take the drug, but am still an almost 100% wheelchair user. So I have nothing to blame except a very nasty relapse.
This is the big problem with poxy MS. If you don’t take a DMD then have a nasty relapse, you have no idea whether the same thing would have happened. If you take a DMD that gives you really terrible side effects, and then a rebound relapse, you don’t know whether you’d have been better off without the DMD at all. If you take Fampyra and your walking improves then deteriorates, you’ll never be able to prove it was the drug that caused deterioration.
You will never know if taking the Fampridine is a good idea or not, regardless of whether you take the drug or don’t. Reading Jen and Charlie’s experience of it shows that. We just don’t know what is round the corner for us.
Best of luck with the decision.
Sue
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Charlie it seemed to have worked great for you but pity it cost you so much but anything that gives a better quality of life is money well spent. 25% increase in walking speed is impressive and must have seemed a wonder drug for you. 5 years is a long time to get such results with it. To be 20 years with ms before ms started to slow you is a long time before it affected it. I’m not even 10 years and my walking is affected for the last 4 or 5 years. If I was older id jump at taking it but I feel like I need to keep fighting and if I feel I really really need it id be more enthusiastic about it. Id like to hear how you get on Tuesday and your experience on fampridine has given me things to think about. Thanks Charlie, Jimmy
Hi Sue, I’ve been trying to look positively at taking it but I’ve stopped thinking about it and waiting until I relax about it and decide. I’ve only a few weeks left until I go back to be retested.its so hard to find people’s experience of it as it’s not approved by NHS. I posted a question about it on the barts ms blog and got no answer. Im just worrying so much about it and thinking the worst that I’ve made it into a negative idea to take it. It just happened so fast to be asked to go on the trial as it was 4 years ago that I asked and I was a bit worse then. I’m doing a lot better now and don’t want to ruin it. I’m going to clear my mind of it and give it a few days or a week and decide then. Thanks so much sue Jimmy
Jimmy
My appointment with my really good neuro, went really well, best 20 minutes of the year so far.
He totally understood my thoughts on coming off the Fampridine and he said he could clearly see from my walking that it wasn’t giving me what I got 4/5 years ago. When we speak bout the 25% inprovement, it might appear big but in reality it relates to only a few seconds over a short period, so unless you time and measure things the 25% just appears to be large. Multiple the time and distance by 10 or 20 then yes it improves it but I just then get tired and fatigued quicker! Swings and roundabouts etc!
He then went all political and actually got really annoyed, not with me, but the system and NICE, he could clearly see impact, he knows exactly what will happen when I stop taking at and the fact that it has cost me £10k for the past 4 years is a disgrace. I am one of the small numbers the drug actually helps. He apologised that he was not able to fund it through his team/unit, unfortunately his budgets work in the same way NICE funding works.
As part of the same discussion he mentioned DLA and PIP, another one of my topics of the year. He found it amazing that me taking the drug, costing me £2.5k a year was actually “helping” the DWP in their decision making process. His exact words were “you are personally paying to reduce your own PIP payments, for the help you are clearly need, the world has gone mad”.
With that he got his PA into the office and he dictated a letter to the the DWP and the tribunal service team and asked her to send that first class post.
Going back to the Frampridine, what he suggested was for me to continue with my prescription at the cost price but instead of taking it twice daily, only take it on an “as needs basis”. So for example, if I am about to travel or go to an event, take it for those periods only and see how you get on. In effect it will not get you back to 4/5 years ago but when you stop you will decline, and these then become “booster drugs” in effect. It will certainly save on cost and it might be a middle ground. I agreed to try that approach to see if it was of use/benefit. He was keen on this for me as it appeared to hm that i responded quickly to the drug, he had some patients that were slow responders.
What ever you decide to do, take your time deciding and make sure you are happy with your decision. It is a decision that might remain with you for a long time!
Best of wishes
Charlie
Charlie you seem to have a good down to earth minded neuro. He saw how much fampridine helps you and saves dwp money but costs you to save them money. Boggles the mind. Must have been an interesting appointment. Neuro hands are tied over bureaucracy in the system,wasting money on the wrong things. I see what you mean the 25% seems a lot more over a longer distance but it’s only measured for 25ft at the start,that makes more sense. Im still trying to decide Charlie, I have to decide quick though as I have to go for my final test to see if I respond in a few weeks and I haven’t taken them yet. The pressure is on me now. You make taking fampridine sound good Charlie, im glad to hear you are staying on it and as yo are doing well on it but pity about the 200 quid a month you pay. Im still unsure if I will or won’t take it mostly due to the side effects/seizure risk but your experience of it helps me a lot. Thanks Charlie, Jimmy
Hi there Jimmy,
Just wondering if you have any further feedback on Fampridine.
I’ve been offered it on the NHS if I pass the blood tests,which I’m waiting to find out the results.
I actually have the months trial dose here, I’m just waiting on a phone call to say if I can start them.
Like you though I’m still unsure what to do ?
Any further feedback would be great.
Thanks