Ampyra - Anyone having trouble with Acorda?
 

Has anyone else had any luck actually *getting* the drug???

Acorda has had our prescription (and insurance approval) for three weeks and we still have not heard from the case manager. They won't even tell us the timeframe for when he/she will call- days or weeks or months!!!!

We are really frustrated over the process....I understand they modeled it after the DMD system - but when my husband was prescribed Rebif we had it the next week! They had *months* to get their systems in place and working....why can't they just be honest about how long it will take...??? If it's 6 weeks - then fine, just tell us and we'll stop calling you!

I applied for it almost 2 weeks ago and haven't heard anything yet...

I will be interested in finding out the outcome since my neuro suggested the insurance companies were not going to cover it. I want to be able to tell him that they are.

Besides all the paperwork involved. Acorda didn't expect so many people to be asking for the drug, at the moment it became available. I think they didn't make enough of the drug to go around. JMO

Few have received it. Many are waiting. How long? Who knows. This is just what I heard from a reliable grapevine.

I assume they don't wish this known to the public so they will try to blame the Neuro's, case managers, lose signed forms, or send papers by snail mail.

I am sure it will be available, but like any new drug, it takes time. I hope all those waiting will hear soon or get it from them or your pharmacy soon.

We are a population who hates to wait. That is reasonable to understand. MS doesn't wait. When you want to try a new drug there will always be blocks in the road. They always make us jump threw hoops to get what we want.

Many times there are shortages in drugs, even those that are not new to the market. Maybe they want to see how many are going to try it so they can make what they need for a steady supply.

You can't just start it and then not get the next refill. They are probably preparing themselves.

That's just my opinion. :)

I am not one of these people who will be taking it, but for those who are, I wish you the best. Go to the Acorda website and send an email to them. that's the way to be heard. ;)

http://www.ampyra.com/hcp/

my ampyra experience
 

i've got ampyra from medco a week ago. it took 2 weeks to finish a deal. my neuro faxed script to my insurance (uhc) and finally i have it. it costs me $50
i take 10 mg twice a day.
for now, i can say - it works different from 4ap i took before. my legs are stronger but it does nothing for my stiffness.

I have a friend that works for the Ampyra patient support and they stated the back up on patients getting their medication is due to the overwhelming response they are getting. They have received over 6000 applications in a month and most require more than just one or two phone calls, there are Prior Authorizations required, appeals and such. they are working hard I assure you of this.

An E-Mail Received From a Friend,,,
 

I thought you might be interested in this report from a friend on AMPYRA!!!

SOME SIDE EFFECTS WITH AMPYRA:
Insomnia, dizziness, headache, nausea, weakness, back pain, problems with balance, MS relapse, burning, tingling, or itching of skin, irritation in your nose or throat, constipation, indigestion, pain in your throat. UTI
GRRRRRRRRRRRRRRR I HAVE MOST OF THESE.

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Is it working? If not, drop it like a hot potato.

So sorry, sweety, love, sally
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AT TIMES I THINK THINGS ARE GETTING BETTER LIKE FOOT DROP, WEAKNESS ON LEFT SIDE, HOWEVER OTHER SYMPTOMS I ALREADY HAVE AND IT SEEMS TO ESCALATE THEM. I NORMALLY TAKE 2, 12 HRS APART SO I AM JUST TAKING ONE A DAY NOW TIL I SEE IF IT BUILDS UP IN MY SYSTEM.

IT IS THE ONLY THING THAT HAS COME OUT TO SEE IF IT HELPS WITH MY BALANCE. HAD AN APPT. WITH MY PCP TODAY AND WAS GOING TO ASK HIM BUT THEY HAD TO RESCHEDULE THAT APPT.

MY NEURO IN ALBUQUERQUE IS THE ONE THAT SAID IF I WANTED TO TRY IT MAYBE IT WILL HELP. GUESS I NEED TO CALL HIM AND LET HIM KNOW WHAT IS GOING ON. IT WAS MEANT TO HELP PEOPLE WITH MS TO BE ABLE TO WALK FASTER IT HAS HELPED SOME OTHERS HAVE NOT. I WAS HOPING IT WOULD HELP BUT DON'T THINK IT WILL. HOPE YOU ARE DOING WELL.

TAKE CARE DEAR
LOVE AND PRAYERS,