This entry is specifically for people with MS.
Today I was contacted by a representative from Acorda Therapeutics to talk about AMPYRA, the newest drug to be approved by the FDA specifically for people with Multiple Sclerosis. The drug is designed to improve walking speed and ability. They want to get the word out to our community and have contacted several bloggers to help them do that. That’s where I come in.
I am also uniquely qualified to talk about this drug because its main ingredient is 4-aminopyrodine (4-AP for those in the know), which I have been taking for the past several years. The good news about 4-AP is that it works. The bad news is that it is not an FDA approved drug, is only available through compound pharmacies and insurance companies won’t pay for it. Now all of that is changing.
To varying degrees, many of us with MS have difficulty walking. In clinical trials AMPYRA helped improve walking speeds by as much as 25%. Having taken 4-AP, the main ingredient in AMPYRA, I can tell you that I walk better and feel stronger when I take it and that is a good thing. Keep in mind that AMPYRA is not a substitute for one of the disease modifying drugs and will not impact the course of an person’s MS. But it will improve walking ability for many who take it.
Were there side effects? Yes, there is a risk of seizures and we knew that when I started on the drug. At first I took 10 mg a day. No problem. Then 20 mg a day and then 30 mg a day. No problem. Then I took 40 mg and BAM! I had a seizure that night. I dropped back down to 20 mg. a day and haven’t had a problem since.
The recommended dosage is 10 mg. twice a day. There is no evidence of incremental benefit with increased dosage, so don’t take more or you might have a seizure! Also, do not take AMPYRA if you have kidney or renal problems.
Here is what they won’t tell you…..4-AP is a leading brand of bird poison. It causes seizures in birds and that is what keeps them away. Who figured out that it might be good for people? I love modern medicine.
Acorda Therapeutics, the company that is marketing AMPYRA, is making the product very affordable for almost everyone. Like many drug companies, they have a program for the uninsured and under-insured who qualify, to receive the medicine at no cost. For those of us with insurance, the company has agreed to limit our co-pays where allowed (Sorry Massachusetts residents) to $40.00 per month. This is much less than what I pay the compounding pharmacy each month and that’s a good thing.
To learn more go to:
http://www.ampyra.com/consumer
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm198463.htm
Or watch a video from the National MS Society at:
http://www.youtube.com/watch?v=8E7DUwkAQv4
Walk better. Then sign up to do one of the more than 600 MS Walks taking place from coast to coast. Bring a friend or join us. You, and your friend, will be glad you did.
Join Us At National MS Society - Walk Event:
Participate. Make a difference. Live a life that matters.
Thanks so much for the blog. My wife has MS and has recently been on Tysabri. Being a relatively new drug, it's so important that there are people out there like yourself that are willing to trial drugs. My wife has considered doing this also. I found your blog from a link from the MS bloggers website which I also have my own blog on at http://hayleysexperience.blogspot.com relating to my personal issues of MS from a loved ones perspective. Thanks for the blog. It's really helpful. :-)
ReplyDeleteHi Mr. Gerber,
ReplyDeletefirst off, I prefer the layout of blogs that displays the original article side by side with your Comment Window. Nothing personal, just that I forget what I am thinking so often that forgetting has become an actual component of my thoughts. Spell-check seems to accept this spelling of 'component.'
My dry toast is gone now and Is suspect I was the one who ate it, there are crumbs in my lap, but dont' worry, I have jeans on!
Are you paid to talk about ... those letters...?
AMPYRA? That wouldn't bother me at all, in fact that would be fiendishly clever.
Ny walking is nowhere near as impaired as my train of thought. BUT, I wouldn't mind getting some of those lousy pigeons out of my air-shaft for good! Would that get me in the Guinness Book of Records for Most Expensive Extermination???
Well, "Bones," is on TV, and if it is one I have seen already, I will be able to follow the gist of the plot.
I have also gotten wads of info & companionable feelings from your blog,
thanks,
Lorraine
PS, and how often do you see "lousy" used correctly?
What a good day this has turned out to be!
I took have experience with 4-AP and think it is great! I welome the FDA approval of Ampyra!
ReplyDeleteMichelle
I'm waiting on the insurance co-pay? Since 4-ap and "Amprya" are essentially the same, my out- of-pocket costs may be the deciding factor.
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