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#1 | |||
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Grand Magnate
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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. Last edited by barb02; 02-12-2010 at 10:38 AM. Reason: correction |
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#2 | |||
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In Remembrance
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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. ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | barb02 (02-11-2010) |
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#3 | |||
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Elder
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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. ![]()
__________________
RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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#4 | |||
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Senior Member
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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. ![]()
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LADY May happiness be at your door. May it knock early, stay late, and leave the gift of good health behind. "Life is what it is". We can only focus on controlling those things we can control, we must let go of the things we can't. |
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#5 | |||
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Member
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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
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Don't Allow What You Know To Get In The Way Of What Might Be |
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#6 | |||
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Elder
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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.
__________________
RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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