Comments on Wheelchair Kamikaze: NMSS Video on Ampyra, New MS "Walking" Drug

I have been on Ampyra for 3 months now, and I actu...

2012-02-07T14:13:13.697-05:00

I have been on Ampyra for 3 months now, and I actually thought I would get up and walk normal again. I have had no side effects and seem to walk faster but the length of time on my legs is still minimal, weakness being a factor. I don't feel like I walk better and am thinking of stopping the drug. I guess I was hoping for a miracle. The cost is astronomical, I just paid $600 for one month. The real cost once my deductible is paid about $60 a month. But, with my Copaxone it runs into a fortune. Thinking about stopping Ampyra but am afraid of what will happen if I stop.

My wife had ampyra for three months, she seemed to...

2011-07-21T23:16:39.234-04:00

My wife had ampyra for three months, she seemed to walk better and had less pain in her legs. Our insurance company just dropped her off of it though we are in the process of appealing. if that fails, i guess we'll look at 4ap as an alternative.

I have been taking Ampyra for a yearish, my husban...

2011-01-23T09:02:49.677-05:00

I have been taking Ampyra for a yearish, my husband said he noticed a difference right away. I noticed about 4-5 months ago, I was falling and getting weak about 2 hours before I was due to take the second dose in the day. It took me a while to put this together, but I gradually moved my dose to 3am and 3pm so I sleep thru 2 of the down times, hopes this helps someone else.

I Took Ampyra when it first came out, And now they...

2011-01-20T22:37:14.253-05:00

I Took Ampyra when it first came out, And now they want to charge me 500.00 a month for it.
I do believe the American public who have M.S. are being ripped off royally by the drug company making this drug. As far as I know there is no known cure for this challenge and Ampyra is the best known drug to work for foot drop. And why are they charging soooo much for it. I have talked to a lot of people and they all say the same thing.I just don't buy the cost of all the testing etc. is the reason.
Let's get this thing fixed!!

Getting Ampyra tomorrow so fingers crossed. Had an...

2010-12-14T12:56:59.683-05:00

Getting Ampyra tomorrow so fingers crossed. Had angioplasty done 2 months ago - no more fatigue or pain but walking worse.

Gerard

Started 4AP in September and it has changed my wor...

2010-11-08T21:22:34.290-05:00

Started 4AP in September and it has changed my world. Get it compounded for $45 a month. Have had no side effects. Am amazed (I know I shouldn't be) that everyone in the medical community is touting ampyra and not a mention of this cheap alternative. Have been diagnosed with ms for 20 years. 4AP gave me the first improvement in my disease history in a very long time.

CWinters

I just started and its working very well. In PT I ...

2010-09-11T19:51:12.299-04:00

I just started and its working very well. In PT I walked further and faster than I've ever had.

I have researched 4-AP. It was originally used as ...

2010-08-05T15:50:51.243-04:00

I have researched 4-AP. It was originally used as an insecticide, but at much higher levels. It was modified for human use. It makes sense when you think about it. It effects the CNS in insects to overload the CNS, thus causing seizures and death. At greatly reduced levels it just gives the CNS a boost, so we get enough electric signals to out limbs. Any chemical can be lethal at high levels, HS and college kids dieing because the drink too much is proof of that. Most perscription drugs if not taken properly can kill you...so to those that scream about it being a killer drug...just stop taking all of your meds and vitamins, because at too high of a dose they will kill you also.

I have been on both 4-AP and Ampyra. The Ampyra w...

2010-08-05T15:37:32.014-04:00

I have been on both 4-AP and Ampyra. The Ampyra works better, no peaks and troughs to worry about, thus you do not get that roller coaster effect. With the 4-AP I felt great almost immediately after taking it and as the day wore on I would start to fail (stiff legs, pain, slower walking); with the Ampyra it is a steady state drug so you just maintain a working blood level and don't go trough the ups and downs. I have perscription coverage so the cost doesn't effect me as much as many others. However when I was taking the 4-AP it was costing me $82.00/mo, kinda hurt a little. But if it can keep me moving and working it was one of my drugs of choice.

I can't believe anyone would ingest this toxic...

2010-05-02T19:45:10.189-04:00

I can't believe anyone would ingest this toxic poison! It is an extremely poisonous bird poison, registered as Avitrol by the EPA, highly toxic to humans, acutely hazardous substance, can cause seizures and renal failure ! WTF !
Read this at Cornell University website:
http://pmep.cce.cornell.edu/profiles/extoxnet/24d-captan/4aminopyridine-ext.html

Has anybody heard or read that fampridine was orig...

2010-03-25T16:34:42.540-04:00

Has anybody heard or read that fampridine was originally used as a bird killer in agriculture??
I am not looking forward to the side effects, if I get any. But, I am looking forward to walking better.

Cool - Thanks for posting Marc. I will add this to...

2010-02-24T14:38:57.312-05:00

Cool - Thanks for posting Marc. I will add this to my site soon.
Best wishes, Stuart
======================================
By the way: I too Have Multiple Sclerosis and this is what propels me to send this message: If You are affected By Multiple Sclerosis as either the patient, a caregiver or a friend, and want to remain up to date with ms information, then please register at this website: http://www.msviewsandnews.org - to receive our weekly MS related, e-Newsletter. - thank you

I'll see your blog post and raise you another:...

2010-02-22T11:46:37.878-05:00

I'll see your blog post and raise you another:

So I have a prescription for "generic" 4-AP. And of course, I have to go to a compounding pharmacy to get it. And here in the bay area, at least, its $50 for about 30 capsules. My insurance does not cover it because it is not FDA-approved. How is this generic? The only thing more expensive in my arsenal of meds is my Copaxone.

And now we have Ampyra which is waaaay more expensive. So apparently we have skipped directly from a "cheap" generic drug directly to an an expensive enhanced version without ever being able to get a this "cheap" generic drug covered by insurance?

Can I get a WTF here?

FDA info:

AMPYRA (dalfampridine) is a potassium channel blocker, available in a 10 mg tablet strength. Each tablet contains 10 mg dalfampridine, formulated as an extended release tablet for twice-daily oral administration. Dalfampridine is also known by its chemical name, 4-aminopyridine, with the following structure: [see .pdf for picture of the moledcular structure]
AMPYRA (dalfampridine) Extended Release tablets are available in a 10 mg strength and are a white to off-white, biconvex, oval shaped, film-coated, nonscored tablet with flat edge, debossed with “A10” on one side, containing 10 mg of dalfampridine. Inactive ingredients consist of colloidal silicon dioxide,
hydroxypropyl methylcellulose, magnesium stearate, microcrystalline cellulose, polyethylene glycol, and titanium dioxide.
Dalfampridine is a fine white powder with a molecular weight of 94.1, CAS 504-24-5 and a molecular formula of C5H6N2. At ambient conditions, dalfampridine is soluble in water, methanol, acetone, tetrahydrofuran,
isopropanol, acetonitrile, N,N-dimethylformamide, dimethylsulfoxide, and ethanol.

In other words, the active ingredient is exactly the same as the compounding pharmacy stuff. For that we're supposed to pay >$1,200 a month (wholesale price).

I think/read somewhere/Something, heard 4-AP from ...

2010-02-18T10:29:26.945-05:00

I think/read somewhere/Something, heard 4-AP from a compounding pharmacy may have been on shelf longer and is not terribly stabile and strength my decrease. Just what I might have read/seen/somewhere etc. With PPMS and in a chair a year, can no longer walk and saw nothing helped in my situation.
kicker