Dr. Sanjay Gupta on Ampyra

[doublevision1]

Did anyone see Dr. Gupta on CNN this morning talking about Ampyra?  He's on at the ongodly hour of 5:30am; I rely on my DVR or I would never see this program.

Anyway, he talked about how it has been approved for MS patients who have trouble with walking.  He commented on what a big deal this is for people with MS, not just because of what it can do, but because it is "...the first MS medication that can be taken as a pill instead of injection," or something to that effect.

Huh?  This drug is not a DMD for MS.  It is a drug to treat MS symptoms.  There are countless oral meds to treat the wide variety of MS symptoms.

Not a big deal, but doesn't it seem like the media never gets it quite right when talking about MS, even when those doing the reporting are doctors?

[Karen99]

The ingredient in this drug is DIRT CHEAP. $1000./month is outrageous for Ampyra!  

My neuro suggested this to me but haven't tried it yet. I'll use a trusted compounding pharmacy if I try this.  My understanding is that this ingredient helps the nerve/brain signals to function more smoothly - gliding across instead of hitting dead-ends.    

This is one medication that you don't want your animals or children to get into by accident.  

[Khiba]

I checked with my medco thingy and its showing up as costing $731 for 90 day supply... For about 245.00 a month, if it made big difference in how I function day to day.. I would sell stuff (not my first born however :) to afford it! And this is one drug Medco cannot substitute a cheapo generic for. :)

Some relief from the spasticity, and being able to take a hot shower again without a nap afterward would be heaven sent.

My Neuro promised to call me as soon as they get the word.

[HVAC]

I hear it is going to be $1000 (probably without insurance) but much cheaper if you get it at compounding pharmacy.

[sllowe]

Thanks for this great discussion!

Erroniously reporting of disease modifying treatment vs symptom treatment is a BIG error.  One that should not be overlooked, and one the society should ask be corrected publicly.

Folks would listen to Gupta explain the error..... maybe we should hit up the MS society to ask him!  In the end, it would benefit us all if people understood more about the disease.....

[Lulu54]

One quick mention about the compounded formula - I heard at last week's dinner with the local neuro that there is a potential problem with seizures on the compounded formula, whereas there is no evidence of that problem with the Ampyra.

He said the difference is the Ampyra is a time-release formula vs the compounded version that releases the drug all at once.

I have not taken the time to verify this information, but it does make sense.

be well,
Lulu

[Dr. Daniel Kantor, MD]

I agree completely with the problems in the media's coverage of MS.

Ampyra (dalfampridine) is FDA approved for improving walking in patients with MS by increasing walking speed, but off-label it should work for many other MS symptoms, such as fatigue and even trigeminal neuralgia and pain.

It may even be looked at for peripheral neuropathies, such as CIDP (chronic inflammatory demyelinating polyradiculoneuropathy), as it is similar to 3,4-diaminopyridine (used in Lambert-Eaton or Eaton-Lambert Myasthenic Syndrome).

Many patients are already on the compounded form (short-acting) -- see:

Daniel Kantor, MD BSE
President-Elect
Florida Society of Neurology
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[grannyhotwheels]

I have been keeping up with it also.  It's supposed to be released in March.  I doubt I'll be one of the 38% it helps but I'm still going to try it if any way possible.  I've had doctors that where supposed to be MS specialist that I knew more about the disease than they did.  You gotta be careful when selecting a doctor.  Just because they state they are well schooled about MS you need to still ask questions and find out for yourself.  

I'll be praying,
Carol

[Khiba]

Thanks Lulu!
I will ask my neuro about getting it compounded. I did hear there were some problems with it holding its potency for very long, the 4 AP that is...

[Fluffysmom]

I got frustrated with Dr. G. a few years back; he seemed more of a doctor of media than medicine.  He was paid for his "opinion" on too many things.  I see he's listed as a neurosurgeon and assistant professor of neurosurgery, according to Wikipedia (quick search).

The Ampyra sounds very promising.  Dr. G. needs a fact checker, for sure, if he doesn't have time to research it himself.

[doublevision1]

Some history on this drug:

www. csro. com /index.php?option=com_content&view=article&id=117:a-made-in-canada-story-fda-approval-of-ampyra-revolutionizes-treatment-for-ms-sufferers&catid=1:latest-csro-news&Itemid=19

This is a huge breakthough of course.  It still bugs me though the way Dr. G. inferred this to be a DMD, when it is not.

[Lulu54]

I read somewhere that ampyra will be available in March.  They have hired 300 reps (or are working on that) to hit the streets and let doctors know about this new one.

If you have a compounding pharmacy you can work with, this same drug is available now, and for a lot less in cost.  Its something to consider....

be well,
Lulu

[Khiba]

I have been watching the development of this drug from 4-AP to Fampridine to Ampyra for at least a year and am eager to be first in line to try it. TM and MS has really taken its toll on my walking ability as well as my ability to use my hands. If there is a chance, even just a 38 percent one, of helping the nerves work a little more smoothly  and help with the spasticity, I will try it. And you don't have to inject or infuse it! :)

The cost is huge. I read it will cost at least $1000.00 a month. Yikes. I hope my insurance will cover a good part of it. Nevertheless, I say its worth a  try! Regaining some mobility would be so uplifting and such a blessing! I will sell possessions if need be to afford it.

At my Neuro appt on Feb 1, they had not heard anything about the drug. The PA was amazed that a sales rep had not come around to promote Ampyra! I begged her to look into it for me and make sure I could try it when it is finally available. She promised to look into it.

The benefits others have gained from taking 4-AP and/or Fampridine as discussed on another forum are excellent. Here is what one person who participated in the clinical trials of Fampridine/Ampyra had to say.

"without it I have a constant feeling of heaviness ~ with it I feel lighter, faster and my gait is greatly improved

without it I don't think straight and feel confused ~ with it I still have trouble sometimes but it's a noticeable improvement.

without it I am very very slow ~ The sensation of SPEED again will be apparent to new users fairly soon after starting it.

without it I cannot seem to stay awake ~ it has eliminated my fatigue, eliminated... ELIMINATED.

without it my balance is Awfull ~ balance was the last thing I 'GOT' back and it isn't all that great still, but I'LL TAKE THIS any day.

without it I have foot drop ~ I have Zero foot drop.... ZERO, NONE, NADA, ZIP now.

without it I am very sad and feel hopeless ~ The realization that hope actually is alive was the first thing I 'GOT' back, nuff said!

without it I cannot walk one block without a cane ~ I still will take a cane with me 8 out of 10 times when going outside but NEVER have to use one while indoors.

without it I have many more potty accidents ~ I still will piddle sometimes, shh lol

without it my spasticity is HORRENDOUS - what's nice is when you are in the shower and you are trying to shave your legs and they don't bounce all around while you're doing that.

without it heat kills me - The sun feels so nice now but the cold still bothers me pretty badly. "

I am so hopeful as its not the MS that brings me down but the physical and mental effects of the disease.

Cheers,
Jessica

[Lulu54]

DV, I do get frustrated when those little errors creep into stories aobut MS.  Don't they have fact checkers to verify the scripts are correct?

Wobbly - this is also available through a compounding pharmacy and has been used for many years here in the US that way.  Ampyra was just given FDA approval in late January. I would definitely talk to your doctors about it because it can be used in PPMS.

my best,
Lu

[LATW]

Hey!  I see a Dr. Gupta but his first name is Ajay.

[saveone]

You are right....when ever i see something on MS or CD I find there is so much misinformation.  Sometimes it is almost laughable.  

terry

[doublevision1]

My understanding is that this med can be tried in patients with any type of MS, however reports of its efficacy are mixed; I read 38% effective in one study.
I don't know if this med has been approved by Health Canada.  I haven't gotten that far in my reading, and haven't heard anything of it on Canadian news, though they've been talking about in the US for a while (it's former name was fampridine).  
Best to call your neuro's office or you could try your local MS society for info.

[Wobbly]

that's interesting... I have PPMS and it has affected my walking alot...and my left leg is getting worse.  Maybe I should find out more info on this drug?  Nothing else that I'm taking Gabapentin, Amantadine... are helping with my leg weakness?

thanks for the info
wobbly
dx