I am interested in people's input re: Ampyra. I mentioned it to my neuro. and he said he would never prescribe it to one of his patients because of all the possible side effects. I was wondering what your experiences were???
Ampyra???: I am interested in people's... - My MSAA Community
Ampyra???
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bavery207
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I took it a couple of years ago, when I started having major difficulties walking. I could hardly lift my legs - was practically dragging my feet. It was REALLY difficult just to go up one step or from the street up onto the curb.
I'd mentioned Ampyra to my neurologist, who didn't have much interest in prescribing it. He didn't believe it would work! It wasn't until I blew up at him and yelled that I could hardly walk and was getting worse that he took notice and prescribed it. I guess sometimes you've got to make a stand for something that you believe can help you!
Within a couple of weeks, I was SO much better! I didn't have any side effects that I could see, so I stayed on it until my walking was almost back to normal. From what I understand, it's not a drug that you should stay on permanently - it's basically for getting you 'back on your feet'.
Good luck with it! Let me know how it's going!
Anne 
Hi, been taking Ampyra over 2 years. Never a problem. It has improved my walking and strengthened my legs.
Strange view from your doc. Good luck
Florence
Can I say "lifesaver"? Ampyra gives me an extra energy boost to my day, without any appreciable side effects like those associated with Nuvigil or Provigil. No hungover feeling. My mind is a bit clearer, and I can usually plow through the morning before I need to break for a nap.
It does affect my sleep at night just a bit, but sleeping through the night hasn't happened in years anyway.
I'd ask your neuro to reconsider the medication. I've been on it for 6 years.
Eleyne92 l take provigal, but never had side effects. Or told of any. What are they? Or l just forgot... ugh
I have taken Provigil for around 2 years and have had no side effects. My doctor did say that it might keep me awake if I took it in the afternoon. It has worked great on my fatigue.
Thank you Morllyn and Eleyne92 I take the generic Modafinil and have for, for about 2 months now. I take it every morning, and it wears off by bed. No side effects thank goodness. Although l do get the jitters a bit for about an hr. Takes me that long to get moving anyway
I was prescribed only half of a 200 mg Provigil/Modafinil pill for a week then increase to 1 whole pill, the half of a pill worked so well that I did not increase to the whole pill (except after my last flare, then back to half) because the half pill worked so well. No jitters, thankfully.
Ah my Dr didn't do that. He didn't tell me that It would take about 2 wks to kick in either. But will take about an hr of the jitters instead of sleeping my life away.
How long have you been on them Morllyn ? From the few ppl l know they said after about 2 yrs it starts having no effect and switch to Adderall.
It is around two and a half years, I think. So far so good.
That's a good deal. And if it does stop working, you can talk to your Dr about going to the full dose .
Ummm...not really sure why your doc feels like he can "never" rx something... Ampyra works extremely well for me. My only complaint is when I don't take it. Been on it going on a year now. God bless the man/men who came up with this little white miracle pill. 😁 Hope this helps. Blessings
great answer it really works well for me to. GOOD LUCK in the future!
Agree!
Good morning Bravery, it is MSFighter touching base with you about Ampyra. My neurologist gave me a script for Ampyra but before he put me on it he told me about possible negative side effects of the drug had with some people. He warned me to watch out for them. During my second month on the drug I started to notice the negative side effects that my neurologist said warned me to watch for. I took myself off the drug immediately
So my advice to you would be to go back to your neurologist and ask specific questions and reasons why he doesn't like Ampyra. Information is always our friend and it's very good to get lots of opinions on this website but make sure you talk to your neurologist and understand what makes him so leary about the drug. Armed with that information you will better be able to make an informed decision about what Ampyra could do for you or could do against you.
Please keep in touch and let us know what's your neurologist has to say about Ampyra . If you choose to take it please let us know about your your successes or any negative issues you might have while taking it. Remember together we are stronger. I'll look forward to hearing back from you and find out what your decision about taking Ampyra has been. Remember together we are stronger!
LOVE LOVE LOVE IT!!! It has literally given me BACK my legz... I can tell it's when it is time for my next pill based on how my legz feel AND how they are working! It's my newest weapon against the MonSter!!!
BTW, I have been fighting the MonSter for 30 long years... I'm a redhead and am tough as nails and Ampyra allows me to be ME!!!
FAITH NOT FEAR!!! We must be tough Warriors against this MonSter!!! Better living through chemistry...
I tried it. I did not notice anything but my wife said she saw a difference. I stopped it August.
I have been on Amprya for 10 months. It has definately helped my walking and how long I can walk at a time. Ive had no side effects.
I also am on Empire for about a year to now it helps with walking speed and strength no side effects hope this helps
Hello bavery207 One of my neurologist had been part of the study and told me it seemed to work for some people. He prescribed it to me. I quit it 2 months later because I had no effect from it.
Hi bavery207, I took 4-AP before Ampyra was FDA approved and loved it. So much more energy with no side effects. It didn't help with walking because I didn't walk at the time. Once the Ampyra was approved I started taking it in October 2010. I had to stop it in November 2014 because I had developed the side effects of tingling of the skin and a heart arrhythmia that would come on about 3 hours after taking a dose and lasted about an hour.
I restarted the Ampyra in July of this year because of fatigue. I took it for two months and then discontinued it because of the same side effects. I also experienced equilibrium problems that may or may not be attributed to the Ampyra, but probably are related as they haven't occurred since I stopped the Ampyra.
I would push your neurologist to prescribe the Ampyra. It was a great drug that helped me for almost 4 years. There is a 2 month trial sponsored by Acorda that won't cost you anything. You can determine if the Ampyra works for you.
Lisa
My neurologist suggested 4-AP years before Ampyra marketed. For any unfamiliar, it's a compound your pharmacist can do - Ampyra is a new time released version, I believe.
I tried switching to Ampyra and two 10mg doses a day wasn't cutting it. So I'm back on the 4-AP and can push higher doses.
If you go into higher doses of 40+mg/day there are major side effect potential. I take 20mg 4-AP in the a.m. and another 10mg at lunch and there are no side effects I can identify.
If walking is an issue, go for it.
Hi Bravery207
I've never been on amprya and my doc said it was never a consideration for me. I'm on tysabri and since it's been working, there has been no reason to come off. Sorry I couldn't be of more help. Maybe someone else has more information for you that may be on it.
Wishing you the best!
I found Ampyra to be very beneficial. Find a neurologist who'se an m.s. specialist.
my neurologist prescribed AMPYRA to me 2 years ago, and it changed my life, its the best medication I ever took, it really helps me. she did tell me its not for everybody, it really helps me especially with FATIGUE. GOOD LUCK in the future!
We are each of us unique, so your reaction to any medicine may be very different from anyone else. I agree that any medicine might be at least worth a try, since it would be difficult to judge your reaction....unless your doctor feels there would be a drug interaction, or you have an allergy to that class of drug.
We wish you the best in your treatment.
I tried Ampyra and did not see any improvement in my walking, but my balance and dizziness were worse.
I am currently on Ampyra and it has improved my walking speed. I am slowly starting to walk faster. But my gait is more on me because of my fear of falling. I have had no side affects. My neurologist actually knows the guy who developed Ampyra and has followed him since they work together.
I've been taking Ampyra since I was dx last summer. I don't know what side effects your neuro means, but I haven't had any. I also started taking Aubagio at the same time as Ampyra. Not sure if losing the enamel on one of my teeth had anything to do with either, but seemed to start the same time I was dx with MS. Good luck to you!
I started Ampyra last week. No problems so far. Keeping my fingers crossed it helps.
I don't know what side effects your neuro is referring to but I have had none. I've been on and off Ampyra for 3 years or so. I say off because the insurance company makes me jump through hoops to get it renewed each time. But I do because it's definitely worth it.
They say it's for increasing your speed walking but I feel that it helps my balance immensely. I don't wobble or lean as much, and feel much more confident walking.
When I first went on it, it was only for a month b/c I was leaving a job and ran out of coverage. I didn't feel any different taking it but 2 of my friends commented on how much better I was walking. That was enough for me.
I also take Gilenya, and other drugs for depression and stomach problems. I don't want you to think Ampyra is the only thing I take. Maybe your doc is concerned with drug interactions from other things you're on ?
Anyhow if walking is a problem for you I would ask your doc what side effects he's referring to, and take it from there. I have benefitted from Ampyra but I'm only 1 person.
Good luck !
Pat
I was only on it 10 days. I had several side effects plus total relapse which caused me to barely able to walk. Had to take steroids to get me back on track.
My neurologist prescribed Ampyra for me. I can not take it twice a day as recommended. It gave me nightmares and I already have enough problems sleeping. My wife says it helps my walking.
I've been on Ampyra for almost 3 years, I started to have problems with my foot drop and a sluggish gate when I walked, tripping over my own feet. Since I started Ampyra most of those problems were solved except for when I have a lot of fatigue. I recommend Ampyra and have not had any side affects. Push your Doctor to prescribe this for you, you'll be amazed. keep on fighting
Stupid question : is Ampyra a type of steroid? I've never heard of it.
Hi Shelly36 amprya is another way to treat MS. In pill form.
Ps no question is stupid ever!
Ampyra is sometimes referred to as "The walking drug", it is supposed to help patients with walking, and some say it is quite effective. I have not tried it.
Good to know. I've been looking for a drug that would help me walk again
I've been taking Ampyra for at least 2 yrs., I feel it works. I wasn't sure if it was and my Doctor said stop it and you will find out.....I did and i'm still taking it. Aubagio is another one with lots of side affects , I'm watch what the group is saying about it , so far I say n000o thanks.
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