Neuro appointment and fampridine
 

I had my six month appointment with my neuro today. He told me that the neurology department at the university hospital where I go is not going to prescribe fampridine. He said that insurance companies are denying coverage, and that the tests have not been impressive. He quoted a statistic that on the average it has only increased walking speed by one second in the 25 foot test. Is that correct?

So he prescribed an gradual increase in baclofen (from 40 mg to 60 mg) for my spasticity. He also ordered a vision field test as I have been having problems with my right eye ( sporadic pain, floaters and cobwebby feeling). And I have to have a MRI in May.

My three year anniversary of my dx is next month.

What a bummer, Barb, that Fampridine is not all it's been cracked up to be. I'm sorry for your disappointment. :(

I hope the increase in Baclofen, works for you. :hug:

Barb and I are neck and neck as far as dx date. I had heard from my MS center that the oral med for increased walking speed was so underwhelming they expected the insurance company to kick it out. they didnt tell me how many seconds it shaved off, but did tell me it was not a drug to prevent relapses and help modify the disease. it was meant only to increase walking speeds.

One second?! that almost makes me mad. :mad:

Fampridine, now named Ampyra (pronounced Am-peer-ra)

It's about one minute better than the placebo and that is only for the 30 percent of the people it works for So if you can walk 25 foot in 6 minutes, this will make you do it in 5 minutes. Some it works for, others it doesn't.

It is just like 4-AP, almost the same drug. But it costs over $1056.00 a month wholesale for 60 tablets. You take one every 12 hours. It is SR (slow release). That is very expensive, if it does little and cost a lot than ins companies may not pay for it.

Mine won't pay for a drug unless it's on the market for one year past it's release date, which is March 2010 by Big Pharma.

It is the first MS-specific treatment (symptom only treatment, not a DMD) to be approved by the FDA since 2004, and the first ever oral therapy, Ampyra primarily helps people who have trouble walking, they say.

I did hear it has other benefits, but they are anecdotal so far. It is supposed to be more stable than 4-AP which is IR (immediate release).

Who knows, time will tell. $12,000.00 a year is a lot if you have to pay out of pocket. I hope it helps someone.:)

One second might not seem like much. As someone who is in the unique position of tracking Kim's 25-foot walks over time, I can definitely say that one second is something to take seriously. I know it doesn't sound like much, but try to extrapolate it across all the things you do in a day, a week, a month. The difference between a bad day and a good day (for Kim, now) may roughly be about a second. Ken

yes, but can we balance that with the side effects created by the drug? let alone the cost financially? one second? I am not willing to add yet more drugs into my system for a one second uptake in speed.

I am glad that Kim has improved her walking speed and stability, but for me, it just wouldnt make sense.

The decrease in walking time may not be the ultimate benefit. Since the nerves work better it may significantly reduce the work of walking, giving much more energy to do other things

I have been wondering whether of not it may reduce the fatigue/pain involved with walking. My neuro said no. I guess I will have to take a wait and see attitude. I plan to talk with him again about it after my MRI in May.

Can one still have a compounding pharmacy make up SR 4-AP or does a release of FDA approved Ampyra mean no or does one have until March? At a cost @31.00 dollars I did this (Prescribing doctor needed). I'm in a chair, tried but it did nothing for me (I can't walk) so discontinued. I found place in AZ (friend had used it so I did, but doctor should know where in your area you might turn). Good luck if you try!!!

Neuro yesterday said it improves walking for those who can walk...improves eyesight for those who struggle and get fatigued at the computer.
He said that in aiding the transmission of nerve impulses, it reduces the fatigue that we get in just struggling to walk/function. I'm in...

Will your insurance cover it? My neuro says no and it is over 1000.00 per month.

Weird...my neuro thinks that insurance cos. will cover it...don't know where he gets that idea, since some insurance cos. won't cover a drug until it's been on the market one year.
We'll see...

I am not sure if my neuro knows what he is talking about or not. I plan to follow up on this after my MRI in April.