04-13-2012, 02:05 AM #1
My neuro gave a script a few months ago--what a hassel getting it! Still waiting for acordia to call with co-pay assistance info. They don't seem at all concerned with new patients. I called the neuro back this morning in an attempt to get a script for 4-AP. Tired of waiting on Acordia
04-13-2012, 03:05 AM #2Registered Member
- Join Date
- Jan 2006
- New Mexico
I was waiting on Ampyra, back when it was called Fampridine and kept having to go back for clinical trials. i finally went off the grid and found a doctor to get a script for 4-AP. Not sure any regular neuro will write one for 4-AP.
In any case, whether its Ampyra or 4-AP, its worth trying. Don't expect miracles but do expect, if you see benefits it will be for more than just walking speed.Steve
sometimes you can't make it on your own
04-13-2012, 04:15 AM #3
I had a similar experience. My Neuro gave me the script, I went to the pharmacy months ago, I waited a month or so and stated calling the Doctor, the pharmacy, the drug company and never could get any information. I just stopped asking.
5 months later the specialty pharmacy called me about my Betaseron and mentioned they had the script for Amprya and told me they would "submit it for approval"..
That was 3 weeks ago, I'm not sure I even want to try it anymore...
Is anybody taking this? Is it any good??Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart
04-13-2012, 10:44 AM #4
my first me
Ampyra was my 1st med prescribed back at the end September, as they orig thought I was PPMS and my walk was so slow....
I don't think I actually got it until the end of October, and that was because I was following up weekly. Specialty pharmacy (CuraScript) lost papers, insurance needed walking test to justify, etc.
Since the beginning, I felt that MS pts are not a priority, we are not in a life threatening situation (thank god), so be patient, but persistent.
I took it for almost 3 months before seeing a result...less balance issues, less fatigue, better walking. No side affects for me, and it is a PILL!! I can handle that.
I've now had flares and considered RRMS, no matter. Started Copaxone on 1/20/12, also a hassle to get started.
After the first 3 months I had to "re-qualify" with another 25ft. timed walk to see if there was improvement. There was.
At $1,220.04 a month to insurance, they want to see that it works, before keeping you on it. Understandable.
My co-pay was $100, so I qualified for the assistance and pay $40 a month.Prob MS 9-14-04; Dx PPMS 9-16-11; RRMS 12-15-11
Ampyra 10mg 2xday
04-13-2012, 10:48 AM #5
My neuro's office called in script for Ampyra three times last year. I never heard from them. I'm not even interested anymore. I'm afraid if they take this long to contact me after many attempts, when I need them while taking the medicine they won't be there to assist.
Sorry you had to wait so long but glad to know I'm not alone.
Take good care.
04-13-2012, 01:04 PM #6Registered Member
- Join Date
- Feb 2009
- Devon, PA
My neuro writes my 4-AP script but he'd never heard of it until I explained it to him, how to write the script and where to get it. Once he was educated he was fine and expressed the same frustrations in trying to get his other MS patients on Ampyra. He also prescribes my LDN.
4-AP from Skip's Pharmacy costs about .30 a 10mg capsule for instant release and I just paid $112 for 300 capsules so that works out to about a dollar a day taking 10mg every 5-6 hours (but not at night). I've never had a seizure for now over three years taking 4-AP at 30mg daily.
It definitely helps with just about all my (spinal-related) MS symptoms and I wouldn't be without it.
04-14-2012, 06:24 AM #7
Thank You Rod Ritch
Thanks for starting this thread..I've learned a lot from all that responded (thank you all)
I guess I need to decide if I want to pursue obtaining Ampyra. My co-payment for my Betaseron is $50 a month..
Thank youSusan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart
04-15-2012, 12:23 AM #8Registered Member
- Join Date
- Sep 2011
- United States
Hearing all of your stories of struggles, it almost makes me thankful I don't have insurance. The assistance program and getting the medicine all went smoothly. Ampyra has really helped me! It helped almost immediately with my foot drop. I have been on it a little over a month. Today, my walking was a lot better! I would say keep pushing to get it!
04-15-2012, 12:48 AM #9
I have been taking Ampyra for a while, it works very good for me, improves balance and posture. I have had no problem getting it filled by Medco, Speciality Pharmacy Acorda. Haven't done a timed Walk in a number of years. I could probably do it now.Bill
Scuba, true meaning of Life! USS Wilkes Barre 91, USS Monitor 96, 97, 99 .. Andrea Doria 96, 98 .. San Francisco Maru 09
04-19-2012, 11:30 PM #10Registered Member
- Join Date
- Apr 2012
- United States
Excited to try Ampyra
Thanks for all the positive comments about Ampyra. I waited for 3 weeks and finally got mine today. I am looking forward to starting it tonight. I have drop foot and balance issues, too. Keeping my fingers crossed this helps!