Ampyra, working or too early!

[lindaz9]

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.

[mrsmike]

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

[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 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 in reply to mrsmike]

Thanks.

[Sandydemop in reply to mrsmike]

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

[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 in reply to mrsmike]

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

[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 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 in reply to lindaz9]

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

[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 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 in reply to rjoneslaw]

hi RJones, i hate that!

[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 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 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 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]

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 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 in reply to goatgal]

hi Goat, do you have any left over?

[pamgarner in reply to Sandydemop]

no our drugstore had a old prescrition take back sorry😒

[Sandydemop in reply to pamgarner]

thanks anyway.

[goatgal in reply to Sandydemop]

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

[Sandydemop in reply to goatgal]

thanks for responding.

[pamgarner]

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

[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 in reply to lindaz9]

i really hope it works for you

[Sandydemop in reply to pamgarner]

hey Pam, do you have any leftover?

[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 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 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 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]

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

[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 in reply to lindaz9]

Good luck! I hope it works for you!

[lindaz9 in reply to Juleigh21]

Thanks!

[Goldilockssearching]

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 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]

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 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 in reply to lindaz9]

Good luck, and keep us posted!

[lindaz9 in reply to IFwczs]

Thank you and I will.

[lindaz9 in reply to IFwczs]

Thank you and I will.

[Bodega1939]

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

[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 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]

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