Frampradine update

Hi everyone, Thought I should update on my frampradine experience so that anyone trying to get it knows that maybe it’s not the miracle drug we were all led to believe. Apologies for epic post before I start! Had my free trial in December…walking very quickly became brilliant…at last I looked like a normal person again!! Sadly side effects were so severe I finally decided it was not for me but to be absolutely sure I would finish the trial. I was more than a little disconcerted to read ( on EL, I think) that a few people had found their walking became worse if they didn’t continue the drug. However it was too late to worry about it…so tried to put it out of my mind. Several weeks after stopping fampyra my walking was still great, saw my neuro, told him that my friend had suggested it had somehow rebooted my brain…he laughed but said who knows with MS. You’re probably wondering why I don’t get to the point!! Well, one day in early April I woke to find my walking had deteriorated to the point that I now need to use a chair indoors and out. So much worse than pre frampradine. Of course it could just be normal progression…who can say? I just felt anyone considering it might want to know. Sorry to be all doom and gloom, however I’ve pretty much come to terms with it and I’m quite happy again…I really was posting to give the info…ohh and also because Pat asked us to post about anything and everything!! Love to all, Nina x

Hi Nina, that’s very useful info. I did notice on holiday how much worse your walking was. Last year when we met up our walking was about the same, but yours has worsened a lot since then. Such a shame Nina as I know you had high hopes… however I give you a virtual ‘high five’ for taking it on the chin!!! Very good info for the rest of us. I think I would now be nervous about trying it but I suppose we have to remember that everyone reacts differently. Take care, Pat xx

Gutted for you Nina, I spoke to my rehab consultant about it very briefly and I said it seems weird that nobody actually talks about how it works, he raised his eyebrows and I can’t remember exactly what he said but he was clearly not too impressed.

Thanks for letting us know

Sonia x

This does interest me.

Now I dont have a DX of MS. One theory is radiation damage to cord. Anyway in Jan/Feb of 2012 I had avastin treatment for radiation myleopathy (paid for by myself £6000). Anyway in June I was feeling well and walking was a bit better. I had another MRI scan and the spinal lesion had resolved. We thought the Avastin had worked but that I had probably been left with some permanent nerve damage. I was then offered Fampridine free 2 month trial to see if that would help with walking. Well… the walking became really bad and I only took it for 6 weeks. My balance was off and I developed nausea. I went back to neuro and had another scan in October and the lesion was back!

Now the theories are :

The avastin worked but wore off - ie needs repeated

the effects of the avastin masked the lesion in June - ie it was still there but couldnt be seen in MRI

Or The fampridine (which increases impulses from the brain) put pressure on the newly repaired cord causing it to flair up.

This has been a concern of fampridine - increased impulses on an already weakened cord.

Actually the drug does annoy me. “It helps with walking”. People with MS can have trouble walking for various reasons

Numbness, Weakness, Spasticity or a combination of these. Which ‘type’ of person will it help no one seems to know. To be honest if it is spasticity that is effecting your walking I dont think fampridine is for you. But that is only my guess.

My walking is back to pre fampridine level no… thank goodness.

Moyna xxx

Thanks for sharing the information Nina, although sorry to hear the outcome had not been better. Fingers crossed things begin to improve a little over time.

Nina thanks for that. I have also considered it but couldn’t afford it at the time. I’m very wary of taking any medication that may affect my mobility as according to my Neuro I need the muscle spacticity to keep me mobile as with my cord injury, my poor nervous system is very broken. I think I’ll give that one a miss, so thanks.

Cath xx

Thanks for the comments everyone! Cath, although it didn’t suit me, it actually works on the brain to leg messages as opposed to the actual muscles. One of the main attractions for me was that my MS nurse has two patients who have not only had improvement in walking but in fatigue levels too…that’s what I was really hoping for! Take care everyone, Nina x