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Starting Fampridine /Fampyra today

Hello, Im new to actually using this forum, hello everyone! after changing to a new neuro recently he has suggested I try a free months trial of this drug, it has just arrived in the post in a huge box, two little boxes of the pills !!! I use crutches about the house, have severe footdrop in both feet and wear two Safo’s on my feet that I could never be without!

I have been reading every post about Fampridine I can and when I read something of hope it is dashed by another of doom!!

I suffer from extensor spasms in both my legs when Ive been sitting or lying down (thats another subject!!) “bain of my life!!” they both spasm out like ironing boards, it is very frightening especially when your feet are being forced against a wicker basket!!

I am looking forward to trying this drug and would really love to hear from anyone who has similar symptoms to mine and your experiences with it good or bad, I feel it is my only hope of better mobility at the moment

Thankyou in advance XXX

Hi Hullaballoo, I haven’t tried the drug but want to say a big HELLO and WELCOME!

Really hope it works for you.

This is a great little gang on here… very supportive… and always nice to see a new member.

Keep us informed about how you get on with the drug… and hope to get to know you better.

Pat xx

Welcome from me too, and good luck with the trial, hope it goes well.

Let us know please.

Pam x

on fampyra 3 months, walking not improved, but, leg strength, bladder and clearer head. ive run out today as prescription lost in post, bupa are no help not sure whats happening now.

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Hello again, thankyou for the warm welcome , Im going to start the Fampradine tommorrow night as my Husband is away at the moment, I think he is scared I might have a funny reaction and wants to be around if so!, this isn’t likely to happen … is it??? Ha !!

joyj, my prescription also came from Bupa, it must be so frustrating that it hasn’t helped with your walking but must be worth it for the leg strength?? as for the bladder, I found LDN sorted that out

Look forward to hearing about anyone elses experiences xxx

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still no fampyra not taken since 6.30am yesterday, feel ok so far. how long til its out of system? thinking of stopping it

joyj, Ive been advised that I will know within the one months trial if it is a drug suitable for me, I guess youv’e tried it for long enough,

have you already paid for this new prescription you are wailing for ? if so I do hope it arrives today!

Did you have great expectations of this drug, are you similar mobility wise to me? xx

not paid for it but prescription went 1st class a week ago, ive been stressed with it all 3 days so i thought id see how i was without it. i cant take it anyway til they get it sorted joy

You should know within 4 weeks, my walking speed improved AND the distance covered in 2 mins. I have been on Fampridine for 6 months, you will be aware of a change and your nearest and dearest will also be aware. No negative side effects apart from nausea which wears off . I wish you luckM

Hi Hullabaloo

Sorry, I have no experience of the drug either but wanted to welcome you to the forum. The people here are lovely and have so much experience they’re willing to share, I’ve definitely appreciated all their support and advice and hope you feel the same way. Take care.

Cath x

Thankyou Min !, well I thought I’d mention how I “was” getting on with Fampyra/fampridine, I gave up Im afaraid a couple of nights ago because just was not feeling well at all

Yes it made my legs feel a little looser but also made them feel weaker. I had most of the side effects too, a feeling in my bladder like cystitis which was very uncomfortable. disturbed sleep, I usually sleep like a log, a sore throat, back ache, little niggly tummy aches every day and constipation, oh and I now have a cold and havn’t had one of those for years and feel wiped out. The bladder problem was the worst and I could’nt cope with it anymore so have stopped the pill after giving it two weeks, My neuro said I will know quite quickly if it works for me but the side effects drove me mad!

So…thats “another” thing ticked off my list that Ive tried and it has not worked next thing my neuro is looking at is possible stem cell treatment, this I am very concerned about though

Joyj did your pills come in the end? xxx

hi, still not here, its a nightmare im phoning every day just being messed about. my legs are weaker without them. sorry didnt work for you

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Hi hullabaloo,

I had similar problems on frampradine… Was great for my legs but it totally wrecked my sleeping pattern, also made me feel very depressed so like you I gave up on it too.

Hope your prescription arrives soon Joy,

Nina x

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That’s very interesting, I too had noticed my mood change/more depressed but ‘they’ said there was no known link with Fampridine/Fampyra! My MS Consultant said she had no idea why it can help walking speed but have no affect on my gait!

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Hi M,

“They” said the same to me about it not causing depression but without doubt it was the cause…few days after I stopped the depression vanished and I was back to normal.

Strange that it’s improved your walking speed but not your gait! My walking speed and gait were massively improved but because I felt so terrible due to the depression and lack of sleep I felt I’d rather walk badly and be happy!

Are you planning on continuing with it? Take care of yourself

Nina x