Amprya Helping or Not??

[jbell2435]

I've been taking 10mg 2/day for about 1 1/2 months and I don't really see any difference. Walking a bit better but not sure if that is the shoes and/or afo brace...

Wondering what dose you are taking and for how long. Did you see improvements right away or take a while?

Thanks!

[Scooter24]

Same dosage as you, now on it for almost 18 months, it has really helped me alot and was quite quickly also in less than a week.
Try not taking a dose or 2 and see what happens, most people say they can feel the difference but like all ms drugs it affects everyone differently.

[barryrado]

ampyra?

hi jbell, when i started ampyra about 20mos ago i had a nasty cold virus. ampyra didnt seem to be working. all of a sudden my cold resolved and i couldnt believe how good i felt. in all, it took about 5 or6 weeks to peak for me. for me it does so much more then just help me walk. when i forget a dose i be come extremely stiff and my brain has trouble processing. when i take the missed dose about 45 mins later it feels like somebody turned the power back on. all i can say is "ampyra is the best med for me". hope it works for you, all the best barry

[bucky1]

Ampyra has given me my life back. I felt a change in just days. It has been 18 months now and it has done much more then help my walking. I agree with the poster who said two stop taking it and then see if there is any differance. The drug rep I have spoken with said if you are not seeing anything after a month or so you will not. They said my results where a super responder. Not all will see the same results.

[bhappy41b]

Ampyra My doc wants me on it but at what cost?

My doc wants to put me on Ampyra, but my insurance company refused to pay for it. I don't know the cost yet as the drug company and I have played phone tag. How do the rest of you pay for it and how expensive is it?

Thanks for listening,
Bobbi

[Scooter24]

Mine was costing me 30.00 a month copay, but I am now being treated by VA and it is a 9.00 copay. They do have a copay assistance program also.

[knuckle]

If you can't afford or qualify for AMPYRA there is always the option of taking 4-aminopyridine ("4-AP")

AMPYRA is 4-AP, hence the name "Am (amino) Pyra (pyridine)".

AMPYRA is made using Acorda's time-release formula in a tablet while 4-AP is dispensed (by a compounding pharmacy) in an instant release capsule. You need to take 4-AP about every 5-6 hours to keep it in your system versus AMPYRA once every 12 hours. There are compounding pharmacies that make a 4-AP timed-release product but there is some debate on how effective it is.

Someone will probably comment on the safety of 4-AP versus AMPYRA because if you misuse 4-AP it can cause seizures. AMPYRA delivers a lower dose over 24 hours (20mg). 4-AP has been used for over a decade for people with spinal damage.

But if you can't get AMPYRA what's your option?

I've been taking 4-AP, 10mg every 5-6 hours, three times a day for over three years and I've never had a problem.

The cost difference is amazing. 300 caps of 10mg 4-AP (a 100 day supply) just cost me about $100 (cash - no insurance), or about a buck a day (from Skip's Pharmacy).

My neuro happily prescribes it because he has such a hard time qualifying patients for AMPYRA.

Here is a good overview on 4-AP written by Dr. Wise Young, who I believe is probably now a multi-millionaire executive at Acorda Therapeutics.

4-AP: All You Need to Know

http://www.mult-sclerosis.org/news/May2000/4APFAQ.html

[bhappy41b]

Thank you so much for the detailed reply. I will check out the website you recommended. That being said I cannot even afford the $1 a day you mentioned for 4-AP. So, I guess I will have to forgo either of these medications and get on with my life. I was diagnosed in 1977 and have been very lucky compared to some folks. I am ambulatory and drive short distances like church and the grocery. I am now 70 yrs young.

[Scooter24]

Check with the drug company, many have programs for low income people, they would rather sell it at a lower price than to not sell it at all and I am sure they are still trying to get more people on it also.

[bhappy41b]

Ampyra

Hi Scooter,
Thanks for the suggestion. I'll do that if I can get ahold of them as we have been playing phone tag. My concern about the medication is the doctor told me that one of the side effects is seizures.

[wkikta]

The risk of seizures is quite measurable with 4-AP, not as much so with Ampyra. However, if you have ever had a seizure problem you cannot take Ampyra. It is very expensive, $14000 per year, so the Insurance wined, but I have MS and it is the only Medication Approved for MS Symptoms so they had to approve it, Medicare.

[bhappy41b]

Ampyra helping or not

Hi Wikita,
Thanks for the seizure warning info. I will have to evaluate the medication and see if we can somehow afford it as my neurologiest felt it would help me a lot. I have not ever had a seizure.

Blessings,
Bobbi

[Scooter24]

Make sure you are calling the correct number as there are numerous ones, go to this web page and it has the info you need

http://ampyra.com/newly_prescribed/financial/

[bhappy41b]

Ampyra helping or not

Thanks Scooter, I will check it out and do whatever needs to be done to see about financial assistance. Thanks so much for your help.

[celeste]

Ampyra has been a miracle for me, but it only works for 30-40% of people. I noticed a HUGE difference within hours of taking the first pill. It wasn't a placebo effect because I was depressed & sure it wouldn't work for me. I have PPMS so I am pretty fatalistic about the whole thing.

When it was first approved there was a story on the news that the manufacturer was committed to making it available to everyone who needs it for no more than $40 per month. My insurance has some strange rules so Accorda covered the cost, less $40 a month, for over a year. Now my private insurance covers almost all of it but I would be willing to pay more if there were no other way.

Ampyra has made my life worth living again - not just because of the improvement in walking but in my much decreased levels of pain & fatigue which have also improved my mood.

Good luck with it. I hope it works for you.