Any Ampyra/dalfampridine user comments?
 

So who here uses it? How long did it take to notice improvements? Any sides experienced?
And if it improves endurance by making a jumper for conduction, does it regenerate nerves over time?
I'll likely get a script for this in 1 week if I desire (I do) and wondering what to expect.
I exercise & consume 50-100 grams of protein daily, inject 100mg testosterone cypionate weekly.
Thanks in advance.

Hi Eddie,
There are many people on the older version 4-AP immediate release. The new one, Ampryra SR, was to be available on March 12.

You have to have forms filled out, your Neurologist must fax all the paperwork to Acorda, who will give you a case manager, case number, etc.. :rolleyes:

Then they go on from there. I heard the co-pay can be $300.00 a month if you don't get assistance for not being able to pay that amount.

I am not sure how long it takes with private ins. They did not expect to have so many people waiting for this drug to come out. I assume they will make a fortune in a few years if this drug helps the MS population.

If you get this drug, before it is delivered or picked up, be sure to ask what the co-pay will be. Just information I heard from others who have sent in their prescription to be filled.

One person who did start it, said he got insomnia from it, but that is just hearsay, IMO.

I took a compounding pharmacy tablet of SR 4-AP (cost full price of 31.00 a month). No real side effects but didn't help this PPMSer in a chair either. It (to my knowledge)doesn't regenerate or fix anything, works (if it does) when you're on it, doesn't when you go off it. Efficiency depends on person. Good luck. Keep us informed!!

Hi Eddie, I've been the phase III/extended study for 1 1/2 years. I take it every 12 hrs - it's not a med that stays in your system. It has helped me with foot drop which in turn makes walking easier. As for strength I can't tell as I have always exercised to the best of my ability therefore kept up my muscles/leg strength.
I don't think it regenerates nerves-but I don't know. I don't seem to need it so much before the 12 hrs is up... I used to recognize the need at around 8-9 hrs ...maybe it just doesn't help as much as in the beginning (?) After awhile I think I get used to a new normal-as with Tysabri my QOL is better and that may be the same with Ampyra (Fampridine)
Good luck and hope it helps:)
Linda

I have filled out the paperwork and am waiting to hear....neuro told me that I should take it in the morning and then around 2 or 3 pm, as I don't need it at night, since I don't do anything but sleep:rolleyes:
He told me it just plugs the holes where potassium leeches out of the damaged nerves, thus enabling the nerves to conduct a bit better.
Also told me it normally costs people about $40/mo. when they get assistance. From whom, I don't know.
I'll let you know how I do when I finally get it. It sure would be nice to be able to pick up that lazy foot of mine...

Thankyou so much for all your replies so far.
I will reduce Testosterone Cypionate 20mg for 80mg total every 7 days when I start Ampyra.
100mg is high putting my level near 1000 but it helped increase strength. Nothing for numbness increasing.

I saw a new neuro today. We got the paperwork rolling :)

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

So sorry, sweety, love, sally
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


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,

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


No side effects when I took compounded 4-AP but noticed when I brushed and spit some blood in sink I thought was coming out of throat. Not a lot, not irritating (didn't know it was there until I spit) and as it didn't seem to help at all, I stopped after trying a month +. Very slight indigestion.

No side effects for me - I'm sure that I was hoping for more, but it helps. I move faster and get around the office without the cane (my boss has noticed a change, my wife does not)