Anyone taking 4-aminopyridine?

Tell us what you are using to treat your MS-- and how you are doing.
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Lainie
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Anyone taking 4-aminopyridine?

Post by Lainie »

I just started this drug to help with mobility. It's not on the market yet, so I have to get it through a compounding pharmacy. Anyone else on it?
AlmostClever
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Post by AlmostClever »

Lainie,

I started 2 days ago (1 capsule twice daily).

I asked the Nuero for Fampridine, which I'm guessing is not on the market yet but as I understand it is basically the same thing.

I did 4-AP once before but stopped after 2 weeks because I didn't notice anything. I don't think I gave it enough time, so I'm gonna do it for at least 6 months and see.

Good luck with yours!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Rainbolt
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Post by Rainbolt »

Fampridine is a slow release version of the medication. 4AP can make you dizzy etc... and I'm thinking the slow release may relieve these symptoms.

I too asked about Fampridine and got 4AP. Unfortunatley though the legs seemed to be getting better transmission of messages from the brain the dizziness was so bad I had to be spotted for the day till it cleared off so if I fell I could be caught! Yes that bad! I am excited that the slow release version, Fampridine, will make things better :)
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LisaE
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Post by LisaE »

I wanted to share an article I wrote on Ampyra/4-aminopyridine which pulls together history of the research and patient stories. I don't know of any other place on the web which has all of this information in one place.

It would be great if folks interested would come read and comment. Obviously I don't participate much here at all, but I do occasionally come to TIMS to catch up on the latest.

Article can be found at AMPYRA™ (dalfampridine) FDA-approved for MS patients; Connie and Melissa share their stories
or http://www.healthcentral.com/multiple-s ... 100/ampyra

BTW, I am the MS blogger at http://brassandivory.blogspot.com/
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KSA
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Re: Anyone taking 4-aminopyridine?

Post by KSA »

Yes, for 2 years now. It's great for me. Within 2 days, it took away painful spasticity I had in my right leg for over a year. Improves fatigue, but not balance.
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Thekla
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Re: Anyone taking 4-aminopyridine?

Post by Thekla »

I took it for several years until my ccsvi procedure in Brooklyn in July. Now I function better without it. I don't feel any need to take it now.
TeresaL
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Re: Anyone taking 4-aminopyridine?

Post by TeresaL »

I get the 4-AP from a compounding Phanmacy in CO
It does help me a lot w walking better, tried Amprya but like the compounded med better
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UWE59
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Re: Anyone taking 4-aminopyridine?

Post by UWE59 »

TeresaL wrote:I get the 4-AP from a compounding Phanmacy in CO
It does help me a lot w walking better, tried Amprya but like the compounded med better
Hi Theresa
you take which amount 4AP per day?

Regards
Uwe
TeresaL
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Re: Anyone taking 4-aminopyridine?

Post by TeresaL »

Sorry for the delay in replying, just saw your question. I take 5mg 2 caps twice per day.
I like the compounded 4-AP better than the amprya.
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Azaeleaprawn
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Re: Anyone taking 4-aminopyridine?

Post by Azaeleaprawn »

I was prescribed 10mg caps of 4-AP and took those 10 mg caps twice for one day. I ended up with horrible shaking each time I took them that day and was totally freaked out.
So I forgot about it for the summer where it was was too hot to contemplate anything like this but once the weather cools I'm going to get a new scrip from my neuro to try a slow ramping up of the drug starting with 5mg once a day, 5mg twice a day etc till I've gotten to 10mg twice a day if I don't get that horrible shaking.
Has anyone else had any bad experiences with this med?
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CureOrBust
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Re: Anyone taking 4-aminopyridine?

Post by CureOrBust »

Make sure you also get it with a slow release filler. You can also take the capsule with food to slow its ingress into your system.
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UWE59
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Re: Anyone taking 4-aminopyridine?

Post by UWE59 »

I started today with slow-release Fampyra 10mg twice a day, 30 minutes bevore meal.
Three years ago I tried 4-AP with shaky success.
Kind regards UWE
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