Fampyra - Update After Completing Trial

Everyday living
1

Morning All,

Just wanted to post an update on testing this medication.

Apologies for what is likely to be a fairly lengthy post, but I sincerely hope it’ll be useful to some (?):

Backgound:

Went to see a private (hideously expensive) Neuro on 30.7.13 to see whether Fampyra would potentially be helpful. Through this discussion, I was assessed as likely to achieve some benefit from this treatment, so a prescription for a free trial was sent off immediately.

Initially, I did a 60metre timed walk twice-a-day, covering various terrain (indoor, outdoor, flat, sloping) for 3 weeks to get a decent benchmark result to compare Fampyra to.

I’m now SPMS, have been dignosed for 14 years and don’t take any other medication (having tried many over the years without any success!), have ‘drop-foot’, voice problems, intention-tremor in the right hand/arm, dizziness, etc. etc…

The Fampra arrived very promptly, but I wanted to complete my ‘benchmarking’ first, so I didn’t actually begin taking the medication until 17.08.13.

Results:

Almost immediately, I noticed a marked improvement in walking-speed (about 30%) and ‘drop-foot’ was much better. This improvement lasted about 10 days.

However, after the initial 10 days (…and almost euphoric effect it had) this improvement started to decline a little. It definitely continued to improve walking, only the effect started to lessen and there was a decrease in the benefit it was having for me.

By the end of the 4-week trial, my gain was certainly still there, but had become so slight, I honestly thought I could achieve the same myself just through exercise (…possibly wishful thinking, but that’s how it felt).

It’s only been 3-days since I completed the trial, but in those 3-days, my ‘drop-foot’ has returned with a-vengeance, walking is slower and more difficult than before (…leg is stiffer than ever), balance is now so poor that I have to hold-on to furniture just to get around the flat. I have also had a resurgance of the neurological pain I was experiencing on a daily basis for several years. Sincerely hoping this is just temporary while I get this drug out of my system and I’m soon back the way I was before the trial (…poor, but bearable ).

Conclusion:

I’m so glad that I was at least given the opportunity to try Fampyra, but personally it’s an awfully big financial committment for such a slight gain. I’d say the improvement I saw was worth about £40 per month as side-effects may also have to be treated by further medication.

For me, I’ll stick to the FES for now!!

Hope this has been useful and I’d be more than happy to answer any specific questions that have occurred as a result.

Do please remember, this is purely my personal experience of Fampyra and it may be much better for others!!

Dom

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Dom, Thank you for getting back to us with your results. lts personal experiences that we need.l can remember when Fampyra was first spoken of on the site -

Whammel did post some info - warning us that although the drug worked to begin with - it did cause more mobility problems later.

Now why is this ? ls it because we are slowly progressing.

Dom, have you spoken to the ‘Fampyra’ people - or do you have to go through your ‘neurotic’.

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Dom - me again - Now l did use the ODstock FES -about 10yrs ago. Gave up with it as l found it such a hassle trying to get the pads in the right place. Saturday, l went - privately - to be assessed for a wireless WalkAide FES. And even with the electrodes turned up to the highest - my foot would not lift up. So my drop foot has certainly ‘progressed’. Now l have been taking LDN for the last 6yrs. And it has worked well for me - and l seriously did not think my SPMS had progressed. Certainly, my fatigue is much improved - and l feel more alive - brighter - positive.

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Hi Spacejacket,

Thank you for posting. I sincerely hope increased mobility issues aren’t a sign of progression, as it’s only been just over a month?!! Hope to see these increases subside over the next few weeks. (I’m a bit moe miffed that pain has returned after a three-year - successful - effort to resolve it !!)

I don’t think there are any specific ‘Fampyra’ people - I’ve just sent an update email to my NHS Neuro, who I’ll be seeing next month. (I have a horrible feeling that if I spoke to/emailed the private Neuro with any update/questions, I would be charged a generous additional fee?!!

Best wishes,

Dom

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Hi Dom

Thanks for posting this. I have been following developments with Fampyra for a while so your experience was helpful.

@ spacejacket. How useful the FES is depends on where your lesions are. It is more useful if you have a lesion on the motor cortex rather than the cerebellum

Anne

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Thanks for posting Dom, it’s good to hear the experience of someone that has actually taken the drug. I hope normal service is resumed soon.

Incidentally, this was the thread referred to by Frances and links to Prof G’s concerns.

http://www.mssociety.org.uk/forum/everyday-living/fampyra

“I hesitate to post this, but thought you might be interested in this view of fampridine from Professor Giovannoni. I asked recently if he still held this opinion and he confirmed the concern still exists. No evidence of course, but one to keep an eye on methinks”.

http://multiple-sclerosis-research.blogspot.com/2009/10/fda-approves-fampridine-for-increasing.html
http://multiple-sclerosis-research.blogspot.co.uk/2012/03/ms-research-da…

Frances, you probably know this already, but the electrodes can now be implanted to avoid problems of finding the right spot. Just a thought.