Hello everyone, I have a question. Is anyone taking the medicine Ampyra to help with walking?

[Cutefreckles72]

My doctor wants me to start taking Ampyra to help me walk better. This medicine cost around $2,000. My local pharmacy can not fill my prescription because my insurance wants to use their own pharmacy. So my local pharmacy has to check and see if the insurance pharmacy has the medicine in stock first before my prescription can be filled. I am hoping my insurance will cover it, if not I going to apply for the copay assistance program the pharmaceutical company offers. Insurance companies can be pain sometimes. I just want to walk better.

[Jesmcd2 CommunityAmbassador]

Have you tried checking out something like goodrx or something like that to see what kind of discount they have Cutefreckles72 ? 🤗💕🌠

[Cutefreckles72 in reply to Jesmcd2]

yes, Goodrx has it but the prices range from $725 to 1,321 for 10mg and 90 tablets. The pharmacy I use for all my medication has the Ampyra for $134 but my insurance company will not use my pharmacy for the prescription.

[Jesmcd2 CommunityAmbassador in reply to Cutefreckles72]

I hate insurance Co. I feel for ya!! 🤗

I haven't taken ampyra before, but others have. I'm sure they will tell you how it works for them.🤗💕🌠

[rjoneslaw]

I take it the med comes from a specialty pharmacy not a regular one mine comes from alliance rx Walgreens prime

[Cutefreckles72 in reply to rjoneslaw]

At first, I was going to get it from Community Walgreens but my insurance company wants to use another drugstore within the company. The rep. at Community Walgreens stated that she will call my Dr. and tell him to send the prescription to this other drug store and it would be mailed to me. She also told me that the Ampyra would cost around $3500. I getting the run around about this medicine. I am tired. 🤪

[rjoneslaw in reply to Cutefreckles72]

I hope it works out for u

[mcknighm in reply to Cutefreckles72]

See if you can get into a copay assistance program . Tell your neurologist you need help with paying for medication. Those medications are so expensive. They have grants to help with the cost. Without the grant I couldn’t afford this medication. Good luck 😉

[cheilke]

I have taken Ampyra for a few years and have seen no improvement. I will stop taking it when I have to pay for it.

[mcknighm in reply to cheilke]

I agree. I will stop it when grant ends and I have to pay for it.

[pamgarner]

I think alot of have tried,now just me,it did not help me but ampyra helped me with the cost

hope it works for you

[janetb1968]

I really wish that NICE would approve this medication in the UK xxxx

[leking1]

I took it for a year or so, but I couldn't tell that it helped me, so I stopped. I hope it works Magic for you!

[Autumn1203]

Hi, I am on the generic form of Ampyra. It’s called Dalfampridine. I use it with Baclofen. I really do not see an improvement in my walking. As a matter a fact, I have to use a walker. Good luck with the medicine. I would check to see if they have the generic form available to try.

[Cutefreckles72 in reply to Autumn1203]

And the generic brand is what's costing me. I am trying to get the generic brand but my insurance company is having an issue with it.

[mcknighm in reply to Autumn1203]

I take Dalfampridine too but see no difference ☹️

[Blondzee2]

I’ve had good results taking it. I also use Walgreens Specialty pharmacy. There is Co-pay assistance also.

[MaryAZ]

I tried both Ampyra and the generic. I didn’t notice any improvement. Maybe I’m just too far down the road.

[purpletustin]

Not everyone shows improvement with Ampyra. I have been taking it for 4 years. There is a walking speed 25 second test your doctor performs in her/his office area. After 6 months on Ampyra my numbers were down to 11 seconds for the same distance. Outstanding result. My unsteadiness and balance have not improved on Ampyra, but I don't think that's an anticipated result anyway. An unexpected and great result has been my legs have strengthened and I can now even bend and get up due to this strength.

My SPECIALTY pharmacy is Alliance WalgeensRX mail order. My primary is Medicare. (I'm 74). The manufacturer offers fabulous patient assistance in the form of very inexpensive medication. I pay $30.00 for a 3 month supply. It was very challenging to get all the necessary people coordinated. My doctor's office, Alliance WalgreensRX and THE MANUFACTURER. Took lots of patience and caused much stress, but I hung in there.

Ask your insurance company who, or if they have mail order a specialty pharmacy they use. I think many, if not most insurance companies have mail order. If they have a specialty pharmacy, call them and they can probably steer you towards manufacturer. That being the case, ask your doctor to send the prescription to that specialty pharmacy. Then, they can on the spot contact the manufacturer to see if you're eligible for patient assistance. When I first did this frustrating and stressful task I was told I wasn't eligible because we have "commercial insurance". My spouse is retired federal. We chose to pay the highest premium for the best insurance. Since we are retired, we managed, but many people have children and homes to pay for and can't afford this.

Recently, a generic version of Ampyra became available. When that happened, my co-pay went from $30.00 for a 3 month supply to $120 for a 3 month supply using this other manufacturer. NO WAY. I received a letter from manufacturer of Ampyra (not generic manufacturer) stating if the doctors stated NO SUBSTITUTIONS, I could remain on Ampyra. My doctor wrote prescription this way, sent it to the specialty pharmacy and my copay went back to $30.00.

This entire thing was so stressful, but don't give up.

[IFwczs in reply to purpletustin]

Which is the best insurance on retirement? Thank you.

[purpletustin in reply to IFwczs]

So many variables. Not only price, but can you get it from your previous employer POST retirement? What area of country do you live in has impact. What can you afford. We have some of the best insurance available. My husband is retired federal. Our insurance that we chose is $2,200 a month. Of this amount, we pay 565.00 of it and the rest is covered by former employer. My husband worked almost 30 years for the organization (not mentioning who). Additionally, we both pay Medicare A & B, but not drugs coverage as his insurance was comparable. Last year our medical coverage, prescriptions, LONG TERM CARE totaled $26,000 plus. We live in a very high dollar state and though we planned for all avenues of retirement for over 35 years, we are having a challenge affording everything. Long Term Care is a killer financially

[IFwczs in reply to purpletustin]

Thank you, this is very helpful. Your insurance premiums are low! My husband has the best insurance now, but it's a killer because I am on it. Long Term Care is expensive now, but he only has 5 more years to go to pay premiums. Mine are indefinite but low. Didn't know employers may offer insurance post retirement. We are in an expensive area now and hoping to retire somewhere warm. I am light-years away from retirement... Hoping to go on disability one day.

[Cutefreckles72 in reply to purpletustin]

Thank you I will keep moving. I am on my husband's work insurance. Hopefully sometime this week my Dr. will send the new prescription to this specialty drugstore so they can call me and let me know the price of it and mail it if my insurance pays for it.

[Amore55]

I took it years ago, like twelve years maybe. It helped a lot for about two years, then just stopped being effective, due to my progression. I remember paying $60 for a 3 month supply! Double checked that with my records. Let us know how you make out. Love, Kelly

[sashaming1]

I took it and didn't notice any improvement. I stopped taking it when I was notified to not take it if I've had any seizures (which I just had some).

[normwithms]

I took it for a few months and it did nothing. My neurologist was part of the testing and told me if it didn't help right away it was not going to work for me so i quit it with his agreement.

[IFwczs]

I agree with many of these posts. Please beware generic Ampyra. Some are manufactured in India and don't work. The only generic from what I understand is made by the manufacturer of the brand Ampyra. This is why my doctor only prescribes brand Ampyra. I have been on it since last December. The neurologist measured my walking speed after 30 days - it had improved. I use a rollator. My leg now bends most of the time on Ampyra. I take it religiously and can't get off the couch when I forget it. Try it - you will know immediately if it makes a difference. But you are not allowed to take it if you have ever had seizures (including as a child).

[Cutefreckles72 in reply to IFwczs]

I plan on trying it if I can get it. My Dr. did the blood test to check my kidneys and they are normal and I haven't had any seizures so I am just waiting for the prescription to go thru.

[IFwczs in reply to Cutefreckles72]

Keep us posted please. Good luck!

[twooldcrows]

never had heard of it ...ha if it works to help you walk is wonderful....

[Lhallgrigsby]

Ampyra was great when I started about 6 years, really helped with mobility, climbing stairs. It also enhanced my Walk aid device and made the signal better. Go for it if you can.

[Cutefreckles72]

I am willing to try it. Anything that will help me walk better I am ready for it. 👍

[Cutefreckles72]

Hello everyone, Just wanted to let everyone that I have been approved for Ampyra with no copay and I will receive it in the mail Friday. Like I said, I hope it works cause I am ready to walk better. And thank you for all the support and advise.

[Hidden in reply to Cutefreckles72]

did it work? It really helps me the last 7 years!

[Tinker-Belle]

I have taken it but it did not seem to help me. Everybody is different, though, so I hope you respond better.

[mcknighm]

Hi. I just started taking Ampyra last week. I guess I’m impatient. I guess I want it to start working right away. Trying to remain positive 😉