Ampyra

[Beula88]

Hello!  I am new to this sight, but was have had MS for almost 3 years.  Walking continues to become for difficult.  Has anyone out there tried the drug "AMPYRA" for walking difficulty?  I go see Neuro in 3 weeks for regular check up and just wanted some other input on it.
THANKS!

[twopack]

"The less side effects the better."  Amen to that!

Just so you know - in case you are plagued by urinary tract infections or urinary retention from your MS - Ampyra can increase the incidence of UTIs in those who use it.

This isn't a guaranteed side effect.  Far from it!  But I do think UTI is the most frequently reported unwanted event during Ampyra use.  It probably shouldn't make many people deny themselves the potential help.  Just something to keep an eye out for in case you do give it a try.

Good luck with a multi-solution approach that will keep you moving.
Mary

[MS1997]

Hello, I hope your LP went well without any problems and headaches. I had LP & MRI back in 1993? cannot remember exactly and dx 1997 with MS after a brain MRI.
Fast forward to 2012- Iam on Betaseron, Ampyra, Baclofen and several over the counter medications. My walking has been difficult since late '08. My legs get so heavy, weak and stiff to walk at times. I cannot walk very far anymore. It's a challenge..take care everyone... and please post any helpful tips. Thanks---
MS1997

[Jacksmom516]

I too suffer with foot drop - two things have helped - an AFO and Physical Therapy - after 6 weeks of pt my gait is much improved and I find I can walk further, longer and with more ease.   We are working on strengthening the muscles of my legs and core so that I have more mobility and I have found it working!!!!  I can do things now that just before Christmas I would never do!

Talk to your neuro about  PT and an AFT as well as the AMpyra - I think that all three have helped tremendously and don't do what i did and wait too long -  once you learn how to walk incorrectly it takes a long time to relearn how to do it right!

PM me if you have any questions

Take care
Tracy

[Beula88]

Thank you!  With 2 teenagers, and lots of running- being able to walk longer would be a blessing.  Thank you for the input- new drugs/ side effects always make me cautious.  :O)

[Beula88]

Thanks Deb!  I have foot drop in my right foot and would LOVE to have a more normal gaint and not limp as badly.  Thank you for the input- I am going to talk to my Neuro about it for sure! :O)

[Beula88]

Thank you!  I also have foot drop in my right foot.  I sometimes feel it continues to worsen, but I wonder if that is MS or muscle loss because I do not use my leg correctly.  I will ask my Neuro.  My biggest desire is to be able to walk SEMI-normal again!  :O)

[Beula88]

Thanks for the note!  The less side effects the better-  I have an appointment in about 2 weeks and I will ask my Neuro what he thinks.  Appreciate the help :O)

[anon07072023]

I'm on Amprya, too. I did the 2 month trial period. I've just been approved now for 2 more months by my insurance company.  I'm not sure what's up with that - that they have to approve this drug every couple of months to see if you still need it or if it's still working for you.  ????  I know it must be really expensive.

I started out with one at 8am and one at 8pm.  I realized that the 8pm dose was causing insomnia.  Also, with the 2nd dose, I felt like my feet were burning/on fire and my fingers felt like some sort of weird pain in them.  I cut out the 2nd dose and all went back to normal.  It seems like my legs feel like they move smoother when I walk with the Amprya.  I hope it helps you...

And I'm sending a big welcome to our new friends here on the forum.
Kelly :-)

[Khiba]

I tried Ampyra a year or so ago and it worked quite well but increased my neuropathic (nerve) pain beyond the limit I could bear.

But its surely worth a try as it does do wonders for the group of people it works for. I would ask your Doctor for a trial of it and I'll bet the company who makes it has a "deal" for a trial amount of the drug, at a greatly reduced cost.

Unless you have a problem with seizures, its worth a shot.

I think they are doing drug trials on a 5mg dose which if it gets approved I would consider trying Ampyra again.

Cheers,
Jessica

[Jacksmom516]

Hi and welcome

I am newly dx'd and am taking Ampyra.  I do see a difference in the heaviness in my legs not as much with walking speed but I am able to walk longer.  Talk to your Dr and see if it is right for you.  Like Lulu said it doesn't work for everyone but it might help you.

Have a great day
Tracy

[EwGrafStar]

Hello!
My name is Alexey, I live in Russia, in the Orenburg region (in the small city of Orsk).Хотел to correspond, share knowledge with you through illness.
I am ill 12 years.
Write all to whom it is interesting.

[debgen]

Hi! I have been taking Ampyra for over a year now. It never made a huge difference. I still walk very slowly. I wasn't sure it was working at all so I stopped taking it for a month and walking became more difficult. My left leg felt heavier, like I was just dragging it around, so I started taking it again. I have been back on it for a few months and it really does feel better. My neuro told me that 30% of people have great results and speed up their walking, another 30% have moderate improvement (like me)  and the other 30% have no results at all. I really hope your results will be in the top 30%!
Good luck :)
Deb

[Lulu54]

Hi ! Ampyra is one of those funny drugs - it doesn't work for everyone. In fact it works for less than 50% of people who try it.  Beyond the assistance with walking, they are lookking at evidence that it also helps with Optic Neuritis, heat sensitivity and cognitive issues.  

If you search this community for AMPYRA you will find many discussions, including the comparison for its generic, compounded version 4AP.-

Welcome to this forum - I hope you will find the infromation and company useful.
best, Lulu

[NormanG22]

I'm currently taking AMPYRA, been it for about 4 months, it does help some, with my drop foot on the right foot/ankle some, not as much as I would like.  Prior to taking the AMPYRA, my right foot would feel extremely heavy when out and shopping for example, now I don't get the heavy feeling but it still get weak fast so when I have to go out, I get what I need and get back out so I can sit and rest it.

Hope this helps, and welcome to both of the new comers above.

Norm

[Beula88]

Well- THANK YOU for the welcome!  I was not sure I was posting stuff correctly.  I found the LP scary- but over with quickly. I started out with ON in 2003, a HUGE relapse in 2007, but we thought it was ligament tears do to excessive exercise.  That lasted 6 weeks- I could not drive, walk up steps, etc.  I was sick, tired, vision issues, panic attacks, etc. until 2009 when my PC decided to send me on to a Neuro.  I was blessed with getting a cancelled appointment and had my dx in 1 month.  I have lesions in the neck, between my shoulder blades and 1 in my head.  I have foot drop in my right foot and find walking a REAL pain most days.  I recently started taking fish oil and noticed improvements in my vision!  YEAH!  I live in a small town, 100 miles from my neuro even, and no real support groups any where near me.  I find some things so frustrating,  I HAD to find an outlet with people who experience the same thing.  I pray your LP goes well and no T-cells are found.  THANKS again for the welcome!  It means a lot!  :O)

[tjlmoo]

Hello Beula88, I am new too! I just joined today. I had two welcomes so far. I thought I would WELCOME you. I have not been dx with MS or anything yet just a lot of test's. I had a MRI of brain. It had a few areas of concern and just one that was prominent.Nothing on C spine, eye test was said to be fine.Bloodwork as far as B12 and thyroid etc good. My neuro's assistant noted several signs common to MS during office visit tests but neuro thinks LP needs to be done to have a dx. I guess I've been blessed that the neuro has moved as quickly since my GP advised me to see one this past August since I have had little things here and there since 2009 but a two week flare up of many symptoms .It was overwhelming at the time but since then I have had a cyst removed from sinuses and I was really hoping that could been part of it all but apparently not so right now I am waiting for the LP on Feb.7 and I will wait to see what the LORD has planned for me. I would like to here more about your journey. I can not share no info on meds due to not being on any but I will lift you in prayer.
Always Grateful, T;)