Hello, hope we are all ok, I have a quick question that hopefully someone can provide their thoughts on.
I started on a Fampridine trail in October/November last year and all was going really well, no side effects or issues and my walking speed and balance improved dramatically. One the trial (free bit!) was over I chose to self fund the prescription, circa £200 a month and again all seemed fine.
However, recently, the last month or so my walking slowed down, balance back to what it was so it is as if the benefits have all gone and it still costs £200. If I stop taking the tablets my walking gets even worse so I am a really awful place. To add to the fun of all this the past week or so I appear to be dragging a foot a lot more than previously, gods knows why.
I have just left a message with my MS Nurse to have a chat about this as I am not sure what I should be doing, stop the tablets all together, keep going, i feel like I am caught between a rock and a hard place and am sort of regretting starting the trial in the first place as I was never this bad before the trial.
Any one have any thoughts???
I’ve been taking Fampridine for just over a year now and, what seemed like a wonder drug for the first months now doesn’t really work. I’m like you if i stop taking it I feel a whole lot worse…psychological or not?? not sure now.
What i can say is that my foot drop is a lot worse these days!! Natural progression or not…i’m SPMS and have been for a couple of years.
I’m lucky in that my work fund the £200 so at least that’s covered!!
l have heard this very sad scenario many times. Please - everyone do not try this drug - you will end up worse then you started. Fampridine or Fampyra or Ampyra [another version].
Did you have to sign an agreement to take all responsibility if it did not suit you.?
Starting people -with MS -on a free trial is the sort of practise drug dealers use to get people ‘hooked’. lts despicable.
To give people hope of being able to walk better - only for them to end up back to square one or ever worse.
My OH was given statins by his GP - and he has ended up with muscle problems in his legs and back and is struggling to walk.
lt is criminal!
The original poster described exactly what happened to me. I went on Fampyra, my walking improved a lot, then got worse and worse over the two years I was taking Fampyra. It was so hard to come off it because every time I did, my walking would get even worse. In the end it started to disturb my sleep as well and I finally managed to kick my Fampyra habit. I really wish I had never taken it and would strongly warn other people to avoid it. My walking is still terrible.
This is all so sad. Something must be done to prevent anyone else taking it. The MS Society - and others should be campaigning for it to stop being prescribed. Consultant Neurologists who recommend it should be banned from treating patients. l bet they get a back-hander for getting people to take it - like GP’s do with statins.
We suffer enough without ‘Big Pharma’ using us like lab rats.
The one thing that always got me about Fampyra was:
If it helps with walking by “pushing” messages through damaged nerves, then surely it will “push” messages through every nerve as well.
Who can predict what effect that will have on the good nerves?
Well, I guess that we can - now.
I was originally down for a Fampyra trial, then it all went quiet.
Then I found out that every PCT (yes, it was back then) in the SW of England had said NO to funding it.
Then it was every PCT in Southern England.
Then the news leaked out that if you were on it, and stopped, so did its help - just like that.
Then I lost interest.
“Consultant Neurologists who recommend it should be banned from treating patients”
You’re not wrong there, spacejacket.
My neurologist won’t admit that the Fampyra could have made me worse. I’m sure he doesn’t get backhanders from the drug company, it is just too hard for him to admit (to himself mainly) that he could have harmed rather than helped me. And, truthfully, I will never know whether I would have got worse at that point anyway - the timing suggests otherwise but I will never know for sure.
I think the MS Society should have some health warnings around its description of Fampyra. But campaigns about this? I think you’d have to have proof that it has harmed people and how could you ever be certain of that? Only by doing big, double-blind, randomised controlled trials. The drug company must have done those already - they thought the drug was good.
l have heard so many reports about this drug - many from people who have to keep taking it - even though it is not helping them - because they are so much worse when they stop. And who would willingly go on a trial for it knowing it could make them worse. A months free trial of something that will do irreversible damage!!
Shocking, absolutely shocking. I’m so sorry for all of you who’ve taken it and suffered because of it. And very glad now that I didn’t.
thanks to you all for your thoughts, I am regretting starting this trial as I was relatively stable before, the improvement was noticeable but now I am seeing the flipside. I am convinced that this increased level of disability is caused by the drug, as I said I was stable before.
I am going to stop taking to see how bad it gets, I will have words with the MS Nurse, does anyone think a course of metheprednisolone steroids might be of benefit in the short term?
The next thing i will need to work out is how to spend the additional £200 each month!
Exactly my thoughts anon!!
I am seeing the MS physio next week, and the MS nurse is going to talk to the Nuero tomorrow to get me back in again to look at me, I agree with all that has been said and for sure I can’t say it was the drug or not for sure.
I am going to stop taking them and then see what happens next week.
I was given a walking aid called Foot-Up made by Somas. It comes in three sizes, for use with shoes; and four sizes, for use without shoes. I don’t know why but I don’t have to use it these days.
I am so glad that I pop in to Everyday Living.
I have been on Fampridine for 18 months, initially all went walking speed improved noticeably. Recently much worse than before (scarily) foot drop and dragging my leg! I forgot to take my morning tablet, felt hellish and didn’t know why until it was time to take my evening tablet. I’m now suck between the same rock and hard place as everyone else. I have Primary Progressive MS, I’m afraid of where this leaves me.
I’m normally positive so take care, be safe. M
I thought Foot-Up | Foot Drop Brace | Össur UK were the company who did foot-up. I used one for quite a while. Before FES that was the best solution for me.
A quick update
I went to see the physio at the MS department of the hospital after speaking to them, she took one look at me and said are you sure your not having a relapse? Isaw what she was saying so we agreed to see if the Dr could fit me in, he did his usual tests etc, the nurse came and took the bloods and unrine samples, within the hour I was out with a prescription for oral methly pred steroids (same awful taste!) and a foot/amnkle strap to lift the front of my foot while i walk. So an hour well spent I think.
Chatted to Dr about the Frampyra and he agreed that as I am having a relapse it isn’t worth taking them, once I am through this relapse we have agreed to get back together and discuss options.
I am feeling much better and I feel so lucky to have such a great MS department here in Bristol (Southmead) to look after us, just a shame about the really rubbish parking facilities at the hospital!
I will speak to you on the other side of this relapse!
That’s good news Charlie! I’m happy for you!
I use a SAFO to help combat drop foot. It’s a lightweight brace which is very strong across the bridge of the foot and is designed to keep the foot at the correct angle to the leg and not to drop. The SAFO is very simple to apply. Splash on some talc, attach 3 Velcro straps and you’re set for the day.
I had my first SAFO about 10 years ago and had to get a replacement SAFO about 2 years ago. It cost about £800 but for me it’s well worth the money.
Way back when, I had the foot up which worked for a while and then wasn’t enough. I’ve tried the FES a couple of times but disappointingly it did nothing for me.
Let me know if you need further info on the SAFO.