Is anyone taking Ampyra? I'm looking in to it. It's designed for MS patients, but I've heard that they are trying it for us AMNers too. Thanks, John

Yes I tried it about 6 months after it came out. I was able to slip it past my insurance because it hadn't been labeled for MS only yet. I took it for about a year or so. The first few months it did feel like it improved my strength and flexibility but that didn't last that long then it didn't seem to do much. I was really excited and thought it would have worked better since it's method sounds like exactly what we would need to help but it was very disappointing. If you do try it I hope you have better results. Good luck.

Thanks Charlie. Sorry to hear that it didn't work out for you. I found out just what you said about it being labeled for MS only. I googled the cost and list price showed $1200 - $1700 per month! WOW. But yet, I came across a chat room site that said that they were paying $25 - $50 a month? Anyway, I met with my Doc on Wednesday and he gave me samples of "Ea4-AMINOPYRIDINE. 4x A DAY 5MG each to try. We'll see....... Thanks much for your input. Take care and God bless, John

I've been taking Amprya for the last few months. I find it really beneficial---increased strength, gait fluidity, stamina, and general energy level. My insurance will not pay for it though. Walgreen's Specialty Pharmacy currently lists it for $1700/month, 10 mg twice a day. Others have had success in finding a compounding pharmacy to, in essence, create a "generic" drug at a fraction of the price. I tried this with a local pharmacy, but did not experience any of the benefits previously noted. I have not given up on this though. I think there are a lot of variables with compounding pharmacies. I would be interested in getting any information from anyone who has experienced benefits from both the brand-name drug and a compounded one.

I just received my Ampyra today. I'm going to start taking it tonight. 10mg twice a day. I'm hoping for some benefit. I'm not expecting to do the next ironman competition but I will be happy with ANY positive results. From all the reading I have done about it the last 3 years it seems like everybody has different results. Some rave about it and some rant about it. I'm hoping I'm going to be one of the ravers

I am really excited about this conversation. I haven't tried it yet but am interested in hearing more from everyone using it. Thanks for sharing.

Well, I took the 4-AP AMINOPPYRRIDINE for 1 1/2 months and there was no change. U.T. Southwestern Med. doc in Dallas said that if there was no affect with this, there would be no affect with ampyra. Damn. I guess everyone is different. deango, I'm hoping with a prayer that the ampyra will help you a lot. Since I had to take the old original drug, and you're taking the new up to date drug, hopefully you'll have better results. I've heard about several AMNers that had good results! Thanks, John Unsworth Fort Worth TX

I just received my amptea and I read a side effect of seizures? Have any of you experienced this with the drug?

I've been using Ampyra (or an effective compounded version) for about 6-7 months and have had no side effects.

Thank you. Is it working?

Yes, see my post above (about 7 posts above this one).

You've experienced seizures?

No, no side effects at all.

Hi bsc78! That's GREAT that it's working for you! Did you find a good compounder or are you paying the $1700? Or, I guess the better question is, where are you buying it and how much does it cost? Thanks for your help! John in Texas

Hi John, A friend of mine in California suggested that I use his pharmacy, Los Altos Compounding Pharmacy (650) 949-1067, because he had good results using the compounded version of Ampyra. I pay approximately $75 for a 30-day supply at 10 mg, twice a day, and they ship it to me. Works well. Not sure if it works as well as the brand name, but also not sure if the brand name works $1625 better!

My insurance covered mine. Try to go through Medicare! I payed like $7.00 30 day supply

This is awesome information and hopeful news! Thanks everyone for the input. I'm in Chicago, and all the docs here are pretty stymied about what to do for any symptoms, so they do MRIs and wait... BSC78, I have some questions for you. Can you reach out to me: mwestfallen@yahoo.com or (312) 217-2208. I have a neurology appt next week, and I am going to ask again about Ampyra (but I'd like to find out more about the pharmacy you refer to in your post). Thanks a million!

Thanks bsc78! My next appointment in December with the doc is to try a compounder. Timing is great for this. Thanks again! John

Compounder? Unsworthj

Hi Anthony A pharmacy that can try and come close to Duplicating Ampyra without breaking the Patent law. Is that what you're asking? John

I am not sure. I received mine through Accredo..