An example of Dalfampridine (4-AP extended release)
Dalfampridine, is an extended release formulation of 4-aminopyridine or 4-AP. It is a potassium channel blocker that is indicated as a treatment to improve walking in patients with multiple sclerosis (MS). Dalfampridine was previously called Fampridine-SR during clinical trials.
Purposes:Walking problems and Fatigue(Started Oct 12, 2012)
Date
Dosage
Walking problems
Perceived effectiveness
Fatigue
Perceived effectiveness
Side Effects
Adherence
Burden
Feb 17, 2013
20 mg
Daily
Moderate
Moderate
Always
Not at all
Jan 28, 2013
20 mg
Daily
Moderate
None
Mild
Always
Not at all
Jan 22, 2013
20 mg
Daily
Slight
None
None
Always
Not at all
Date
Feb 17, 2013
Advice & Tips
I stopped taking Amprya because of an unrelated stomach ailment, which temporarily stopped all my oral medications. When I started taking orals meds again, I opted to skip the Ampyra as an experiment because . . .
I spent several years learning to manage my secondary fatigue, which (I learned) is heavily connected to the use of my legs. In other words, when I don't use my legs (even when I can), I avoid substantial fatigue. So I've leaned using my legs is like driving an electric car with defective batteries and no energy gauge.
Taking Ampyra is like installing better batteries (i.e., I walk better), but they are a different size, so my previous sense for running out of energy is all wrong. Not only do I run out of energy suddenly and unexpectedly, but the recharge time is longer.
So . . . do I stay off Ampyra and live like I got used to? Or do I take Ampyra to walk better, but work to become accustomed to a new internal energy gauge?
ahhh heck, this is MS, we're used to working to become used to constantly changing new normals :) I'll go back on it. Thanks for listening.
Cost
< $25 monthly
Date
Jan 28, 2013
Advice & Tips
I've been taking Ampyra for about 4 months, now. Its effects appeared slowly and gradually. I asked my doc last week about stopping it because I didn't think it was helping much, even though my PT scored my walking better (no longer a fall risk). He said he'd rather I just skip some doses to see; so I did.
I started noticing a difference within a few hours of missing a dose.
After skipping two doses in a row then falling, I started taking it again. I haven't fallen since starting Ampyra; my balance is definitely better with it. So are my bowels; mine have been mushy and frequent for ages; taking fiber helped, but with Ampyra my bowels are near normal again without the extra fiber (the constipation side effect of Ampyra seems to be helping me).
Cost
< $25 monthly
Date
Jan 22, 2013
Advice & Tips
Firmer Stools is an unexpected positive effect.
My wife and PT both say my walking is better since I started taking Ampyra. I do notice improvement but only very slight. Without Ampyra my walking ability gradually deteriorates the more I walk. With Ampyra, my walking ability stays stable while I walk, but then suddenly gives out, and my legs feel like their veins are full of diluted menthol. So Ampyra helps make my walking better while I'm walking, but it does not help me walk longer. Is it worth taking? I haven't decided yet.
Purposes:Improve mobility and MS (Multiple Sclerosis)(Started Dec 21, 2012)
Date
Dosage
Improve mobility
Perceived effectiveness
MS (Multiple Sclerosis)
Perceived effectiveness
Side Effects
Adherence
Burden
Jan 09, 2013
20 mg
Daily
Major
Moderate
None
Always
Not at all
Date
Jan 09, 2013
Advice & Tips
So I could not sleep at all the first nigh but that improved every day. My sleep is totaly back to normal now. I am walking MUCH better and have been playing Hacky Sack with my two sons! I'm no where near 100% but my balance have really improved and I feel much better going up and down stairs. I would deffinetly ask you Dr. about this med and give it a try.
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