Ampyra, working or too early!: Hi everyone... - My MSAA Community

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Ampyra, working or too early!

lindaz9 profile image
47 Replies

Hi everyone - hope you're all doing good. i have a question. I have been on the brand pill Ampyra for about two weeks now. Should I see an improvement by now, or is it too early yet. Before this, I was on the generic for a month and it didn't work; that's why I switched to the brand name. How long before I see some improvement? Thanks.

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lindaz9 profile image
lindaz9
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47 Replies
mrsmike profile image
mrsmike

I am no longer on Ampyra, but when I was I saw results within a few days.

lindaz9 profile image
lindaz9 in reply to mrsmike

Thank you for your response. Can I ask you why you stopped taking it and what symptoms did it help?

mrsmike profile image
mrsmike in reply to lindaz9

It helped with lifting my foot instead of dragging it. I now take a compounded version as I was getting financial assistance from the manufacturer and as of 12-31-17, if you were on Medicare they would no longer give assistance. The cost was prohibitive, so I now have a compounder make it for me.

lindaz9 profile image
lindaz9 in reply to mrsmike

Thanks.

Sandydemop profile image
Sandydemop in reply to mrsmike

Hey mrsmike9 what is that and how would i get the compound?

mrsmike profile image
mrsmike in reply to Sandydemop

My neurologist told me about a local compounder. You need a Rx from your dr. The compounder takes all the ingredients that are in Ampyra and makes pills for you at a fraction of the cost. Hope that helps.

Sandydemop profile image
Sandydemop in reply to mrsmike

that sounds amazing! thanks for letting me know. what a great idea!!

SueAB profile image
SueAB

Pharmacists will tell you that it takes two weeks to get into your system. I tried Ampyra and it made me walk like I was drunk. Everybody is different, so maybe it is not for you.

lindaz9 profile image
lindaz9 in reply to SueAB

Thanks for the response. I am going to give it a little longer, but if nothing, them I am going to stop it.

mcknighm profile image
mcknighm in reply to lindaz9

I agree. I will try it a little longer but if it doesn’t help I will stop it

rjoneslaw profile image
rjoneslaw

I take it works but I'm slow.

I think the stronger I get the faster I walk because of pt.

When I stop pt I tend to slow down. Crazy I know, when I start to improve insurance pulls the plug saying I have MS and I'll never get better

lindaz9 profile image
lindaz9 in reply to rjoneslaw

That is terrible. Insurance companies suck. I wish you all the best. I tried physical therapy, but it didn't work for me. I am trying to get stronger with the weights first. I am going to give the medicine a little more time to see if it works.

Sandydemop profile image
Sandydemop in reply to rjoneslaw

hi RJones, i hate that!

Frances_B profile image
Frances_B

Although some people will get results very quickly, for others it can take up to eight weeks to see if it is going to work, . If it hasn't done so in that time then it's probably not going to work for you - there is a significant number of people who don't get any benefit from it (I think it could be as high as 30 to 40% that it doesn't help). I was one of them and stuck it out for seven weeks, but the side-effect of massive constipation was too much for me to persevere even for that extra week to see if I got any benefits. You also need to remain vigilant about the seizures risk that goes with taking it.

lindaz9 profile image
lindaz9 in reply to Frances_B

Thanks. I understand the side effects, which I don't like, but I am going to give it a little more time. I try to keep a little bit of hope going.

Bodega1939 profile image
Bodega1939 in reply to Frances_B

Yes, I got results from Ampyra within an hour and a half, literally. I think I have had MS longer than most people who try Ampyra and I also think the results are extremely variable. I was not able to walk period. I do have episodes similar to that now but they may be due to adrenal insufficiency. I don't know. It is very hard to make some deliniations when talking about MS and other autoimmune problems.

lindaz9 profile image
lindaz9 in reply to Bodega1939

I can't believe it started working right away. I've only been on the brand name for almost two weeks and it hasn't helped yet. I am going to give it a little more time.

goatgal profile image
goatgal

My guess is that you should see some slight changes at least this far into the treatment. When I attempted Ampyra, I had an adverse effect within the first hour, so I would assume positive effects might begin that quickly as well (and yet be imperceptible to walking improvement which might occur more gradually.)

lindaz9 profile image
lindaz9 in reply to goatgal

Thanks. I am going to give it a little more time. Some improvements might not be the ones that I am looking for so therefore I would not think it's working. I am waiting for my balance to improve as well as my walking.

Sandydemop profile image
Sandydemop in reply to goatgal

hi Goat, do you have any left over?

pamgarner profile image
pamgarner in reply to Sandydemop

no our drugstore had a old prescrition take back sorry😒

Sandydemop profile image
Sandydemop in reply to pamgarner

thanks anyway.

goatgal profile image
goatgal in reply to Sandydemop

I gave my remaining Ampyra to a fellow MSer a long time ago. I'm sorry.

Sandydemop profile image
Sandydemop in reply to goatgal

thanks for responding.

pamgarner profile image
pamgarner

I took it for 90 days did not see or feel any any difference

lindaz9 profile image
lindaz9 in reply to pamgarner

Thanks. I'm sorry aqbout no improvement. I am going to give it a little longer, as I hate taking medicine anyway.

pamgarner profile image
pamgarner in reply to lindaz9

i really hope it works for you

Sandydemop profile image
Sandydemop in reply to pamgarner

hey Pam, do you have any leftover?

Hstrychick81 profile image
Hstrychick81

I’m on the generic. I’ve been on a version for like 3 years. I noticed a difference after a few days. I missed a dose the other day and I felt awful.

lindaz9 profile image
lindaz9 in reply to Hstrychick81

Thank you. What kind of changes did you see? I would like to see some improvement in my balance and with my walking.

Hstrychick81 profile image
Hstrychick81 in reply to lindaz9

Sorry it took me so long to respond. It helps my walking speed and stops my legs from feeling so weak and wobbly. It might do more but I am on 3 meds for walking so it's hard to tell them apart.

lindaz9 profile image
lindaz9 in reply to Hstrychick81

Thank you. I'm glad it's working for you. I haven't been on the brand name too long, but I'm going to give it a little longer.

Juleigh21 profile image
Juleigh21

I tried it twice and it just made my legs ache horribly.

lindaz9 profile image
lindaz9 in reply to Juleigh21

Thank you and I am really sorry it didn't work for you. I hear everyone is different so I am going to give it a little more time.

Juleigh21 profile image
Juleigh21 in reply to lindaz9

Good luck! I hope it works for you!

lindaz9 profile image
lindaz9 in reply to Juleigh21

Thanks!

I began the brand name around 5-6 weeks ago. Bits of improvement took about 4-5 weeks to notice. I was feeling a little discouraged but remembered it could take 6-8 weeks & I tend to be impatient 🤨 so started the 2nd bottle. This past week has shown MUCH improvement. I will need to switch to generic next month due to “supplier” issues and am hoping it continues to work as well 😬

lindaz9 profile image
lindaz9 in reply to Goldilockssearching

Thank you so much. That news gives me a little hope. I was on the generic brand for about a month (finished a whole bottle), but it did nothing, so now with the brand I am hoping to see some improvement.

IFwczs profile image
IFwczs

Generic may or may not work (mostly not). My neuro gave me a walking test after 30 days which showed speed improvement. I cannot live without Ampyra - not because of this perceived speed improvement, but because I cannot function at all without it. My knee wouldn't bend for certain Pilates and yoga poses without it. I couldn't get off the couch. I have been on brand since December 2018.

lindaz9 profile image
lindaz9 in reply to IFwczs

The generic definitely did not work. I have only been on the brand name for about two weeks, si I am going to give it a little more time.

IFwczs profile image
IFwczs in reply to lindaz9

Good luck, and keep us posted!

lindaz9 profile image
lindaz9 in reply to IFwczs

Thank you and I will.

lindaz9 profile image
lindaz9 in reply to IFwczs

Thank you and I will.

Bodega1939 profile image
Bodega1939

Yes, the best of all alternatives for you and do keep us posted.

cassielynn71 profile image
cassielynn71

I was on it for about 3 months. I had to get off of it because it really messed with my emotional / mental state. During the time I was on it I didn't think it was helping either. But when I stopped taking it my legs became cumbersome and uncoordinated once again.

What I'm trying to say is that the positive effects from the med was a slow and steady progression. So much so that I didn't really notice it at all.....until i stopped it and ended up back where I started!

lindaz9 profile image
lindaz9 in reply to cassielynn71

Hi and thanks. That is why I want to give it more time. Right now I really don't see too much, but I don't think it been long enough. I don't like taking medication because I don't know what it is doing to my liver.

mcknighm profile image
mcknighm

I have been on amparya too for about 2 weeks. I still don’t see any difference.

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