I saw my neurologist today. He watched me walk and asked me if I wanted to try AMPYRA. I have read some of the literature about the drug but I haven't read much about it on these boards. He told me that his patients give him mixed feelings about the drug. Can anyone on this board share their experience with me ? Thanks.
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Jerry,
I've been on Ampyra for almost four years. It works really well for 33%, helps in 33%, and not at all in 33%. I'm in the middle third.
The 1st few months I noticed a positive effect, but for me, it then seemed to stabilize at a certain level. Unfortunately, it doesn't stop progression which continues. However, I've stuck with it because I do believe it continues to help and not just in walking (the company chose walking because it is measurable).
Acordia, the company, will cover any deductible over $40 with their copay assistance. I began using them this summer when my copay went from $40 to $200. It took about a month to get it started.
I'd say give it a try. Maybe you'll luck out and be in the top third! With the assistance, I find it cheap enough to continue to use it. -
I am on 4-AP which is the precursor to Ampyra and the same mechanism of action. It helps a bit with movement, spasticity and fatigue.
I think it is worth a shot. Anything that helps, right?Comment
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I stated to write a response but my 'MS hands' pushed a wrong key. Anyhoo, Misslux, I have seen that you take 4AP and I know it is 'compounded' for you. I can't convince my neurologist to go that way. So, I guess, I will get stuck with paying the co-pay (and I am afraid to find out what that will be). I will go on the Ampyra website to find out what assistance Acordia offers.Comment
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I've been on ampyra for 2 years. I have found it very helpful with improving my walking. I only know this because if I am late taking a dose I get much clumsier have leg spasms and am more fatigued. Those symptoms are usually my reminder that I forgot to take it. My neurologist said that that is very typical of ampyra. Patients don't really notice the benefit until they miss a dose. I think it's worth trying. I don't think I could keep up at work without it.Comment
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Oh yeah, I wasn't suggesting to go the 4-AP route, just that the mechanism of action was the same so yields same/similar results. So weird your neuro won't prescribe a compounded formula!Originally posted by JerryD View PostComment
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I started 4AP after my PPMS dx in 2009, then my neuro switched me to Ampyra when it came out. I also receive the mfg co-pay assistance.
Seems to help since when I'm late on a dose I notice. My progression has continued but I've remained on it with no issues or side effects.Comment
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Hi Jerry, I was in the 1/3 that it didn't do a darn thing for. My Neurologist said we'd definitely know within 3 months, and I saw no change, so I went off of it.
Hope you are on the other side of the stats.Comment
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