I have always felt the ampyra has helped me with my walking but with the ampyra going generic and the assistance fund not able to help anymore I may not be able to afford it anymore so I am afraid of what will happen to me physically if I have to stop taking it? Acorda told me that 2 weeks after I stop taking it I will go back to how I was before I started it. I started taking it not long after I was diagnosed and have been on it 5 years. I don't remember how I was before I started it, I just know I have always believed it helped me. Since I started using it I have fallen and broke my hip and wrist 2017 and had my hip and wrist replaced. This made my MS progress alot so I can not walk much and use a wheelchair. I am a widow and live alone I worry if I get unable to walk at all and can't take care of myself what then? Right now as long as I have the ampyra I am able to take care of myself. advice is needed
What will happen to my walking if I have to stop Ampyra after 5 years of taking it?
Question posted by zero54 on 4 June 2018
Last updated on 14 June 2018
Answers
Hello
My first recommendation would be to call your general practitioner or the specialist who prescribes your Ampyra prescription.
Make sure your doctor knows of your financial situation your diagnosis and how long you've been taking Ampyra.
Second, make sure your doctor is aware that this is not an optional drug it's of dire necessity.
Finally, go on the official website for Acorda Therapeutics.
AMPYRA website explains where & how to get the Acorda medication. Also, speak of Financial assistance for those who qualify.
Finally, if your still in need of Acorda assistance, reach out to the Multiple Sclerosis Community. They too have their own website.
Best of luck!
bestpup
I have talked to my neurologist and he does not feel that ampyra helps that much. he is willing to let me keep taking it but I can't afford it much longer. The acorda assistance programs can't help anyone that has medicare. my insurance pays most of the cost but not enough for me to pay the rest. I am a widow who fell in 2017 and had a broken hip and wrist and surgery and rehab all this made my MS progress so I can hardly walk and use a wheelchair a lot and I believe the ampyra is why I can walk as much as I still can. If I have to stop taking this I may never walk again and if I can't walk I can't live here alone. I own a house and write and paint which I love to do. the church bus picks me up for church so I am alright now but without the medicine???
Hello again zero54
In my opinion you must continue to stay positive & pro active when it comes to health problems & challenges.
I don't have a serious disease such as MS, however I have been dealt a few hands that were hard to overcome.
I myself have found that throwing in the towel is not an option. Instead, we must find the strength and wisdom within ourselves to carry on our medical challenges.
You mentioned that your neurologist doesn't believe that the medication Acorda is helping you very much. Well then either get a different neurologist or educate him as to why Acorda works well for you.
Also, talk to other MS individuals. Get their advice as to what helps them walk? Who knows maybe there's a cheaper medication out there that you're not aware of.
Finally, by keeping the communication channels open you may find ideas coming from the least likely people.
Good luck in continuing to fight for what works for you!
Be well!
bestpup
I called acorda about financial help and yes the have it but if you have medicare which I DO YOU are not eligible. I also called the MS society and they have no programs because it is going generic. I will keep looking and praying. thanks for writing
Hi Zero54
I'm glad to hear you're not giving up looking for the Acorda.
Another idea I thought of would be to contact the pharmacy you get the Acorda from.
I too have Medicare for some scripts, therefore I understand how tricky the insurance is at times.
Might you share your situation with your pharmacy? Just maybe they'll come down on the price or have an idea all of their own?
One time my local pharmacy used a secondary insurance. I once filled an expensive med and they allowed me to use a "quantity price" of the script even though I only bought 30 pills.
I'm surprised the MS Society didn't have any suggestions for you? I would try them again. This time ask to speak with a supervisor.
You must continue to ask anyone you feel comfortable with for help. I.e. family members, possibly members of your church?
My final thought, call the help center here. Drugs.com. They might be your best bet? Drugs.com doesn't sell or fill prescriptions, but they do offer drug discount cards.
Good luck, keep me posted pls!
bestpup
I have an update that might help everybody I have a church friend whose brother has MS and takes Ampyra and he says it helps him. He like me can't afford the high cost so his doctor prescribed him 4-ap which works like Ampyra and it only cost about 50 a month. He is satisfied with it. I am going to check it out. The Ampyra is suppose to go generic in July and the MS society says there will probably be some assistance programs to help with the cost. At present no one knows what the cost will be and since I have already purchased enough Ampyra to last through July I am going to wait and see what this new generic Ampyra will cost and what if any assistance program are available if that does not work for me then I will try the 4-ap
Related topics
multiple sclerosis, generic, ampyra
Further information
- Ampyra uses and safety info
- Ampyra prescribing info & package insert (for Health Professionals)
- Side effects of Ampyra (detailed)
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