Ampyra - when and why did you give up?

[barryrado]

hey all, stopping ampyra will definetly tell you if it is working for you. i have been on ampyra for 10 months and it has chaged my life. last week i forgot my 2nd dose and i could not balieve the difference. ampyra masks the worsening for me. i am now totally dependent on this med. be well, barry

[DebRA]

Barry how long did it take you when you stared to feel adifferents

[GinnyRuth]

I've been on it for three weeks and have noticed no improvements. My fatigue might even be worse. I guess I'll stick with it for a couple more months.

[ScooterVanMan]

I'm very late for this thread, but I have been on Ampyra since November and am cautiously optimistic about it actually . . . helping me. I am standing, walking better than I have in years. Is it the Ampyra? Is it just the waxing and waning of MS? Is it Astrology? I don't know.

I know my neuro thinks the compounded version is exactly the same medication, but I've heard from other folks that it's not. I think one difference might be that I am pretty religious about taking my pill every 12 hours (-ish), and when I was on the 4 AP bird poison (sorry, that was the only results you got when you Googled it a year ago!) I know I missed doses quite a bit, and certainly didn't have the drug in my system constantly (i.e. 24 hours a day).

So like I said, cautiously optimistic . . . and still trucking along with the drug just fine.

[skreynolds57]

Compounded 4-AP and Ampyra is the same bird poison.

[Sir-Voor]

O’please, enough all ready.

So what?
Beta-blockers, cholesterol meds, thyroid meds, ACE inhibitors, birth control pills, and etc will kill dogs, Cocaine was an ingredient in soda, the medication Warfarin was a rat poison.
Again So What!

And if you have not noticed, we are not birds, rats, nor dogs.

Although I have been called a rat and a dirty dog, it does not mean i should not take meds poisonous to them.

Sorry, i statement just hit a PET peeve I have.

[laurel]

I was on Ampyra for 5 weeks. I developed insomnia so my neuro told me to reduce dosage to once a day. That helped but It really did not help my mobility. It actually made my balance problem worse so I stopped.
Unfortunately, I tried Ampyra at the same time my neuro made me take a "vacation" from Tysabri. Now I am back on Tysabri so I may try Ampyra again. Any thoughts?

[skreynolds57]

Sir Voor, I agree with you, its not a good argument against it.

I'm actually glad to take the compounded form since I don't like how it affects my sleeping, taking my last dose in late afternoon (vs evening) gives it time to get out of my system. Sustained release wouldn't do that.

[Cate Power]

I gave it 10 weeks, things became worse, and that was the end of that.

[Cate Power]

I took it for 10 weeks and stopped when things became worse.

[NoirFan]

Ampyra

I tried ampyra three months and it wasn't doing anything. I went back to taking Fampridine 10 mg/4x/day. It's not a cure-all but works better for me than ampyra. I've asked to increase my ampyra dosage from 20 to 40 mg a day. But, the neuro won't allow it.

[Softball 23]

Took my first pill this morning. Will keep you updated. I am hopeful and am praying it will help me.

[CasinoKathy]

Hi softball, welcome to MSWorld!!

Good luck with the Ampyra! I've been on it since July and it has strengthened my weak leg alot. I now can bend it/pull it up when in bed or in the lounge chair.

As far as helping my walking, hard to say, as my balance is bad. If my balance was better, I think my walking would be somewhat faster. I know it has helped with other sx too!

[HIPSTER40]

THANKS- IM GOING TO START THIS MED SOON- IM LOOKING FORWARD TO SOMETHING HELPING ME WALK BETTER- KEEPING MY FINGERS CROSSED

[Softball 23]

So far so good. No side effects as of yet. Have had a few bad headaches which is a normal thing. My legs have felt better today, I hope they continue to feel this way