Anyone taking 4-aminopyridine?

Tell us what you are using to treat your MS-- and how you are doing.
Post Reply
User avatar
Lainie
Family Member
Posts: 64
Joined: Tue Feb 06, 2007 3:00 pm
Location: WI

Anyone taking 4-aminopyridine?

Post by Lainie » Thu Dec 31, 2009 2:38 pm

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
Family Elder
Posts: 366
Joined: Mon Dec 21, 2009 3:00 pm
Location: Houston, TX
Contact:

Post by AlmostClever » Mon Jan 18, 2010 2:19 pm

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

User avatar
Rainbolt
Family Member
Posts: 33
Joined: Thu Nov 19, 2009 3:00 pm

Post by Rainbolt » Sat Jan 23, 2010 5:37 pm

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 :)

User avatar
LisaE
Newbie
Posts: 6
Joined: Thu Sep 18, 2008 2:00 pm
Contact:

Post by LisaE » Fri Jan 29, 2010 12:49 pm

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/

User avatar
KSA
Newbie
Posts: 4
Joined: Mon Jul 05, 2010 2:00 pm
Location: Canada
Contact:

Re: Anyone taking 4-aminopyridine?

Post by KSA » Tue Oct 04, 2011 6:47 pm

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.

User avatar
Thekla
Family Elder
Posts: 149
Joined: Sun Jul 04, 2010 2:00 pm
Location: Germany

Re: Anyone taking 4-aminopyridine?

Post by Thekla » Wed Oct 12, 2011 1:44 pm

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
Family Member
Posts: 81
Joined: Wed Oct 23, 2013 4:14 pm

Re: Anyone taking 4-aminopyridine?

Post by TeresaL » Fri Mar 06, 2015 5:27 pm

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

User avatar
UWE59
Family Member
Posts: 28
Joined: Mon May 31, 2010 2:00 pm
Location: Germany
Contact:

Re: Anyone taking 4-aminopyridine?

Post by UWE59 » Sat Mar 07, 2015 4:46 am

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
Family Member
Posts: 81
Joined: Wed Oct 23, 2013 4:14 pm

Re: Anyone taking 4-aminopyridine?

Post by TeresaL » Sun Jun 28, 2015 5:35 pm

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.

User avatar
Azaeleaprawn
Family Member
Posts: 96
Joined: Wed Oct 05, 2011 10:12 pm
Location: Canada

Re: Anyone taking 4-aminopyridine?

Post by Azaeleaprawn » Wed Sep 16, 2015 1:22 pm

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?

User avatar
CureOrBust
Family Elder
Posts: 3367
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Re: Anyone taking 4-aminopyridine?

Post by CureOrBust » Wed Sep 16, 2015 4:07 pm

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.

User avatar
UWE59
Family Member
Posts: 28
Joined: Mon May 31, 2010 2:00 pm
Location: Germany
Contact:

Re: Anyone taking 4-aminopyridine?

Post by UWE59 » Sat Sep 19, 2015 3:11 am

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

Post Reply

Return to “Regimens”