AMN EASIER

Ampyra

I had taken 4-AP in compounded form years ago but did not feel much difference.

I started Ampyra ER 2 months ago and have been a little surprised.

I don't walk much (falling results in bone breaks) but I do exercise on a recumbent elliptical and use leg weight machines.

Huge difference in strength, control, and stamina. I have definition in my legs again.

The real change was being able to virtually stop by Baclofen and Gabapentin intake.

I had been taking 60 mg of Baclofen a day and 900-1200 mg of Gabapentin a day.

Now, most days I don't take any of them unless it is a cold day or at bedtime if the pins and needles are too uncomfortable. The dosing now is very occasional 10 mg Baclofen and 100 mg of Gabapentin.

The downside is Ampyra is really expensive.

Has anyone had similar experiences?

I take it twice a day but sometimes it gets in the way of sleep. Does anyone take it just once a day?

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I understood that because Ampyra is an MS medication and anyone else who would be able to get their hands on it would pay through the nose. May I ask how you came by your supply? What do you mean that it gets in the way of sleep?

4-AP does help me. 20 mg/day plus 20 mg/day of baclofen. Both in 5mg doses. I wonder if Ampyra would benefit us all. Do you know if any research is being done on this drug for AMN patients?

I was diagnosed in 2011 and my symptoms are still manageable. I am fit and in good condition but I feel the progression. I do get tired if I walk too much, say half an hour non-stop. That's when I could trip and fall.

Glad to hear that it's working for you!

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I pay through the nose. My insurance is a high deductible so I pay a lot for 4 months and then nothing for the rest of the year.

My doctor wanted a baseline with Ampyra due to the consistent release. Then we will switch to compounded forms.

It took a lot of phone calls to the manufacturer, the insurance company, and the doctor to get a trial over a few weeks. The manufacturer used a copay company to manage the expense.

It is temporary.

The dosage is twice a day. As long as I get the second dose in by 7PM, I am good. Otherwise, I can't sleep.

I exercise and lift weights 6 days a week and have dropped 50 pounds. The Ampyra has improved the weight and length of time, I can tolerate.

Thanks for the info.

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