FAIL Ampyra Log: Started Oct 31, 2011

[ActiveMSers]

I took my first dose of Ampyra, the "walking pill," this morning and plan to track my walking prowess over the next couple months, about the max time thought for the drug to be fully effective. I'll be taking two doses a day, 12 hours apart.

AMPYRAź (dalfampridine) Extended Release Tablets is indicated as a treatment to improve walking in patients with multiple sclerosis (MS). This was demonstrated by an increase in walking speed.

It helps in about 35-43% of folks. Will it help me? Honestly, I'm not going to get my hopes up. And since I'm pretty anal in my training, I'll know if it's doing anything sooner than later. So I'll post regular updates here on my walking progress or lack thereof.

Here's a good article and FAQ by the National MS Society about the drug:

http://www.nationalmssociety.org/new....aspx?nid=2586

[ActiveMSers]

Several days in and zero difference, which is to be expected. If I had felt anything that quickly, it would more likely be the placebo effect than the drug. I am a bit dizzy, though, which is not that fun. Hopefully that will go away....

[ActiveMSers]

One week in and the dizziness is better (not great) and my walking has improved absolutely zero. I'll post another update a week or so from now.

[ActiveMSers]

Nothing that noticeable. Worked out on the bike for 45 minutes nonstop the other day (legs only), but my previous high was pretty close at 40 minutes....

[ActiveMSers]

16 days in, and my goal of reaching a month of Ampyra has failed. I would have been more patient, but the side effects have just been too severe and the walking gains never materialized.

Folks say give it three weeks, a month, month and a half to see if it worked, but if I waited that long I might have been seriously up a creek. The sore throat, which started at around Day 9, was annoying. I couldn't understand how I caught a cold when I saw only my wife and she was well. Ah, but that is a side effect of the walking pill.

Another side effect that I initially chalked up to stress (although honestly I never get that stressed): insomnia. And it has been brutal. My average sleep time over the past 10 days has been about two hours (falling asleep around 4 a.m.). An Ambien might push it to three or four hours. Stick a fork in my Ampyra experiment, I'm toast.

I know others who have had great success with this drug (including SCTers), but it wasn't meant to be in my case. There is currently a trial testing 5mg of the drug vs 10mg (current dosage) to see if side effects drop down. If so, I might give it a try. MIGHT. Let me sleep on that for awhile...

[Stella]

Hi Dave,

just want to say sorry to hear that Ampyra did not work out for you and also for putting up a log to track your progress. I really appreciate when people share information on side effects or good or bad experiences with drugs concerning MS. At the moment, Ampyra is not available in the UK and after your experience, I am not really excited about it anymore. On the lighter side though, my walking has improved and my physio thinks that I may have been having a relapse at the time of the walking problems. She does not think I need any medication for the walking now.

In regard to the DMD, I am currently on Rebif and although I am not experiencing any flu-like sympytoms, I am having other side effects which make me wonder if I am on the right DMD. For one thing, it is an immune surpressant which makes me more prone to infections. This is the worst I have ever felt health-wise in all my life. It is good I already have an appointment to see my MS doctor next month so hopefully, will maybe get some answers and get put on the right DMD or at least put my mind at ease regarding my concerns.

Stella

[ActiveMSers]

Don't forget, for some the drug has been life-changing, so keep that in mind. My sore throat went away about three days after the last dose and I'm sleeping better. Not great, but better. At least I won't have too wonder if I was missing out on a drug that could have me jogging again....

[AMFADVENTURES]

Personally I think you were wise to drop it as quickly as you did.

I tried Ampyra a little over a year ago, my Neuro thought I was a good candidate. The idea of a potassium channel blocker helping the MS symptoms never made sense to me unless one had a potassium channel problem but I know not all MS therapies do, so I gave it a shot.

Six weeks in I was hit with a full on relapse, mind-numbing fatigue bad enough to put me on the couch most of the day. I stopped taking the drug immediately and within three days the fatigue started to lift. I called the Neuro and the pharmacy to let them know what had happened. A few days later I got a call back from the pharmaceutical company asking me what exactly had happened so I assume I'm a statistic now.

I'm not sorry I tried it, at least it indicated I didn't have a potassium channel problem, but I'm really glad I got off of it quickly when it became obvious it was doing more harm than good.

There is a huge promotional push going on for Ampyra, at least in my area, right now. I only hope MSers and Neuro's are monitoring and reporting the effects this drug is having, as they may not be all that innocuous.

[ActiveMSers]

AMF, that's pretty scary. I know the odds of a relapse go up a little with Ampyra and that's the last thing any of us would want. It did make me hesitate trying the drug for as long I did (1.5 years post transplant). It was stressing me out a bit worrying that a relapse might happen, so in a way I'm glad it didn't work. And I don't have to be on a pricey drug to walk better the rest of my life....

[Outdoorslover]

Amp

I also tried Ampyra just after it came out in the spring of 2009. I was on it for about two months in the first week I went from 1 or two Baclofen a week to one or two a day. It did help with my fatigue but that was about it. We really looked forward to its release but that quickly fizzled.

Ron