Ampyra

[Sara Angela]

It seemed to help ALOT about a month in. I was reading the side effects and I had 6 out of 14. How can you tell if what you are experencing is normal MS stuff? I had thought I might stop and see if my symptoms improve?

Sara

[nappy]

Me too

I too had been taking Ampyra and thought I had plateaued or that it had stopped working.

I started it last fall and was in PT until Jan.

I could notice a difference but my family could too. The second dose of the day was harder for me to remember. There were times that I ended up skipping the second dose and waiting until morning to ge t back on schedule.


My husband and family could tell a difference and would ask if I had taken my medicine or not.

Then about six weeks ago I thought it had lost its effectiveness. So I called my neuro to see if I could take vacation from it to see if it would jump start the Ampyra.

She told me to skip starting on Friday and call her on Monday to tell her how I was feeling. Monday morning I was on the phone. I felt terrible.

The Ampyra was continuing to work but I was in a flare and the Ampyra couldn't keep up.

I am back on the Ampyra and currently doing IVSM

Try taking a vacation from it and see how you do.
Good Luck and take care,

[pocoapoco]

Ampyra

I'm not sure if Ampyra is working for me. I've been on it for 2-3 weeks. Sometimes I feel that I'm walking a little better, but its not consistant. Then again, I could be over doing it. I wish I could walk without using a walker. I guess I just need to give more time.

[Sara Angela]

@pocoapoco, Definately keep it up! You are too early in the process to quit!

@nappy I took a vacation starting yesterday. I'm also staarting another round of steriods. Hope you feel better soon!

Sara

[Red7172]

I just started Ampyra. (on the 11th)

I have always wondered about how to tell the difference from MS or medication side effects. Honestly I tell my doc if it is something that really effects me or it stays for a while. I always way if it is a side effect if the side effect is worth it for what the medication does for me.

I also usually wait about 4-6 weeks before I start worrying about the side effect because my doc usually tells me to wait that long to see if the side effects will go away on there own.

I love this med (at least right now I do) I knew my walking was bad but when people you only see when you check the mail or go to the store comment on how much better you are walking

[lisa1014]

I just got an email that the drug reps are having a meeting in my town about this drug. I am thinking about going, I am newly diagnosed and am still walking okay but I figure knowlege is power and I may need it in the future.

[Sara Angela]

Well back on.

Last night with my husband sprawled across the bed... I got up to go to the restroom. I finally got my stiff leg bent and was trying to just get my foot up on the bed. I realized I better start back on Ampyra!

Sara

[nappy]

Sara-
How are you doing now that you are back on the Ampyra? It took me a few days to get back to the level my system had before.

I also finally did a round of IVSM. It was a complete mess with the schedule of nurses all confused and I ended up missing a day- getting 4 rounds in 5 days but none of them 24 hours apart.

I am on the taper now so we will see.

I think I see a difference but I am not sure if it is the steroids or the Ampyra. At this point I don't care as long as it is a difference!

Hope you are doing well-
Take care

[slckjebw]

It helped me but after about 3 months I had to get off of it.

my cheeks were turning fire red after I took it.

I waited a while so I could give it a chance and I was hoping

if it was a side effect it would get better since I was seeing

good results.

It became really difficult to tolerate so I finally

asked my doctor if I could just stop taking it. Now I am back

to "normal". My doctor added Nuvigil to my medications,

I take it around 7:30 - 8:00 am. It does help keep me

awake but it also gives me inssomnia!



L A

[04blackcobra]

I have been on Ampyra for over 2 years. When I first started taking it I noticed a good improvement. There are times when I feel it is not doing much and I either miss a dose or stop it for a couple days and I am much worse. When I am walking better I find I tend to over do it and then feel weak afterwards. I then blame the weakness on the Ampyra not working.

[knuckle]

One of the issues with Ampyra is that it is unrealistic to expect the drug to slow release the 4-Aminopyridine consistently over 12 hours due to what is going on in your stomach. In short, variability may depend on what you eat.

Another reason why Ampyra may not be working as well is that your MS is progressing.

As an alternative, you can consider taking 4-Aminopyridine instant release capsules during the day, about 5-6 hours. It's the same drug as Ampyra but made at a compounding pharmacy and much, much cheaper. "Ampyra" is derived from "Amino-Pyridine".

With instant release you can control dosing better and take a little more because the risk of seizure is less.

I take 10mg "4-AP' every 6 hours (not at night) for a total of 30mg a day. Cost = $95 for 300 10mg capsules (100 day supply) - cash/no insurance.

Another 4-AP benefit is because it is so cheap, you don't have to meet the insurance company requirements involved with Ampyra.