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The National Multiple Sclerosis Society has released a video featuring the noted neurologist Dr. Patricia Coyle, answering questions on Ampyra, a recently approved drug that's meant to increase the mobility of MS patients by increasing the conductivity of damaged nerve cells .
I wrote about this drug a few weeks ago (click here), noting that it's a time released version of 4-AP, a compound that has been used to treat MS symptoms for decades.
The following video covers all of the pertinent information about Ampyra, but doesn't go into the one controversial aspect of the new medication, its cost. The wholesale price of Ampyra is over $1000 per month, while the same amount of the generic drug that it is derived from, 4-AP, costs about $30.
One reader of my previous post did leave a comment that they participated in the Ampyra trial, and found the drug to be much more effective than 4-AP. That's welcome news that would make Ampyra a valuable tool for those struggling with MS. I certainly hope this info is correct, considering the price of this drug. If anyone out there has any information on how Ampyra differs chemically from 4-AP, I'd appreciate your passing it on...
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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.
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FDA info:
ReplyDeleteAMPYRA (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'll see your blog post and raise you another:
ReplyDeleteSo 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?
Cool - Thanks for posting Marc. I will add this to my site soon.
ReplyDeleteBest wishes, Stuart
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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
Has anybody heard or read that fampridine was originally used as a bird killer in agriculture??
ReplyDeleteI am not looking forward to the side effects, if I get any. But, I am looking forward to walking better.
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 !
ReplyDeleteRead this at Cornell University website:
http://pmep.cce.cornell.edu/profiles/extoxnet/24d-captan/4aminopyridine-ext.html
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.
ReplyDeleteI 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.
ReplyDeleteI just started and its working very well. In PT I walked further and faster than I've ever had.
ReplyDeleteStarted 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.
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Getting Ampyra tomorrow so fingers crossed. Had angioplasty done 2 months ago - no more fatigue or pain but walking worse.
ReplyDeleteGerard
I Took Ampyra when it first came out, And now they want to charge me 500.00 a month for it.
ReplyDeleteI 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!!
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.
ReplyDeleteMy 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.
ReplyDeleteI 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.
ReplyDeleteI have been on Ampyra for two months, as they first sent me a 60-day free trial. Now, I'm running out of the free trial pills. I contacted the manufaturer, but it seems they haven't received the insurance authorization to send me the medication under co-pay. I decided not take it this morning on my day off to see how my body reacts without it. So far, my walking is slower and weaker than it was when I first had Ampyra.
ReplyDeleteI'D TAKEN COMPOUNDED 4-AP FOR SEVERAL YEARS... NO PROBLEM, NO NOTICABLE BENEFIT, ONLY COST $30. I STARTED AMPYRA, MY CO-PAY $40/M, IN MID DECEMBER. I EXPERIENCED 12 OF THE 14 MOST COMMON SIDE EFFECTS. I CONTINUED TAKING IT THINKING THEY WOULD EVENTUALLY GO AWAY, BUT THEY NEVER DID. I STOPPED TAKING IT 2 WEEKS AGO AND STILL DON'T FEEL RIGHT. DON'T KNOW WHY ANYONE WOULD WANT TO TAKE SOMETHING THAT MAKES YOU FEEL WORSE!
ReplyDeleteI have been taking ampyra for 3 months and i noticed an improvement in my walking (and getting up steps) much improved, right away- within 2 days of starting (1) pill per day- the 2/per after 2 wks. I didnt see too much improv. from 1 to 2 pills but after 3 mo. my doc. said i could drop down to 1 to see what happened and i felt like my walking got harder again . it def. helps balance& speed. Side effects for me was strange 'foggy head', mild headache , mostly- in the beginning but now i do not notice anything and i feel fine (well, my normal ms fatigue, that i had b/4 ampyra and bal. issues. ive never had any of the awful other side effects:) I think its great- even a 10-15% improvement is worth it for me.
ReplyDeleteI have "had" MS for 36 years. I have been blessed to have had very few major exacerbations--1986, brain stem in 1992 and 2003, with lots of "little ones" along the way in between. For the last three years my walking was becoming problematic--started Ampyra with 60 days of "trial" in Sept and it was a miracle--could walk my dog again, walk out to mailbox without worrying about falling in road. Problem was the insurance co and the cost--took it out of formulary, tried the compounded form--$13 vs $1300 per month--it worked but I had issues with dizziness, muscle spasms. Since the beginning of 2013, a new year, new rules from insurance co, but each month is a fight to get approved for a refill. Ampyra enables me to work (and PAY TAXES), perhaps I should give up and go on disability and go on the Obamacare Dole--maybe then I could get it for free.
ReplyDeleteI'm just checking info on 4-ap and ampyra for a friend that doesn't have MS, but has Downbeat Nystagmus, but Dr. has suggested this drug. Can't understand the differences in charges for the drug. Her insurance doesnt want to cover it either. They said it would cover a 30day supply then have to petition for it. Some of these post say $30 others $1000. Would appreciate any other ideas.
ReplyDeleteThe compounded version of the drug, 4-AP, should only cost $30-$50 per month. Ampyra is way up at about $1300 per month, unless your insurance company agrees to pay for it. Seems like people are reporting that Ampyra is more effective than 4-AP, but it may be worth it to try four AP first, unless your friend's insurance company cooperates.
DeleteI was on Ampyra until 2 days ago when my insurance decided the improvement on my walking wasn't good enough and now won't pay.Apparently the 10-15 seconds of evaluation on my benchmark day my walking was too good. But that's another issue to deal with.
ReplyDeleteMy doc said I could try 4AP. I read that it isn't as good because it isn't time released. Can I just break it up and take it throughout the day?
There's no need to break up the 4-AP capsules and take a little throughout the day. People on 4-AP generally take the capsules at 4-6 hour intervals, or as needed. I think that a time released version of 4-AP is available from compounding pharmacies. However, if you can't get a time released version, you simply need to take the 4-AP capsules at prescribed intervals during the day. One thing – never, never exceed the recommended dosage. Nasty things can happen if you do, and that goes for 4-AP or Ampyra…
DeleteJust curious, does anyone know why Ampyra has to be stored at room temperature versus refrigerated? Does it lose its efficacy or something worse, cause harm if kept cold?
ReplyDeleteSorry, I've no idea why Ampyra has to be stored at room temperature. I imagine it might have something to do with the time release nature of the pill, perhaps if it's cold things get screwed up? Probably a question for your Dr.
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ReplyDeletePrices current
01/07/2016 ACCREDO HEALTH GROUP INC AMPYRA
10MG TAB ER 12H 60.0 $2,007.11 $2,007.11