Ampyra for Multiple Sclerosis User Reviews (Page 2)

• Lha...
• Taken for 2 to 5 years
• June 9, 2012

"I still use a scooter. But, I've had MS for almost 40 years. I am able to do physical therapy and stand. I have much greater energy and a significant lessening of my horrible fatigue, with improved bowel function. The effect leaves soon after the end of the dosage period. My husband loves how it has improved the quality of both our lives."

• Jig...
• March 24, 2015

"Ampyra has been great for me. One of the biggest improvements is that I can stand up for longer periods of time. Before, I got tired and had to sit within 5 or so minutes. Now I can stand longer. My legs don't feel quite so heavy, and my foot drop is better. A couple of times, by accident, I have missed taking my medicine, and the change was very evident. When I got back on schedule, again I was much better. I am so glad to have this medication!"

• msp...
• October 7, 2010

"After 3 weeks on Ampyra, I have recovered feeling and function in my left hand after ten years. I have resumed eating after decades. And a permanent brain fog has lifted. My walking and balance are better, though I still use a walker. I consider it a miracle and feel mentally reborn."

• Anonymous
• September 28, 2010

"My husband has secondary progressive MS and has been using Ampyra for 1 month. He didn't see any changes at first, but we now notice that he has an easier time swallowing (he used to cough a lot while eating/drinking), he hasn't fallen at all, and he thinks his balance is better. Since the changes have been subtle, he is now keeping a diary of how he feels each day."

• SS4...
• June 9, 2011

"I have been taking Ampyra for 3 months and have noticed my weak leg is stronger and faster. My son noticed I was taking the stairs faster as well. I can put my leg in my pants while standing without using my hand to help it. I had insomnia at first but changed the times to 5 am and 5 pm with two ibuprofen at 5 am since I noticed some back pain in the mornings. That's gone."

• mik...
• August 17, 2010

"I took my first dose today. The first thing I noticed was tingling in my legs and hands. As the day progressed, my legs have felt less heavy, my left leg has dragged much less, I'm not shaking as bad, and I have a lot more energy. I can't wait to see how I feel by the weekend."

• Ste...
• May 4, 2016

"Worked for me within 10 days. I was using a leg brace and cane, and once it started working, I've never used them since. Most annoying side effect is frequent bladder infections, but I work with a urologist to control them. This drug saved my life."

• All...
• October 4, 2015

"Ampyra is amazing! I've only been taking this for a week and a half and love it! After 4 days of taking it, I noticed substantial improvement! I am able to walk unassisted and stand for longer periods of time, feel like I have more energy and am looking forward to doing more things with my kids! AFO is still needed, but I feel so much better!"

• mom...
• August 12, 2014

"It has definitely helped majorly with my arm function. My husband can tell, and I can too. If I have no pills left or haven't taken them, my arms go around a little like gummy then. When I did a lot of walking, I didn't care how fast I was, just happy to even be able to do it."

• Ken...
• Taken for less than 1 month
• March 22, 2016

"Recently diagnosed with MS (December 2015 - 3 months ago). The MS specialist at UTHSC San Antonio prescribed Ampyra. I had extreme weakness in my right leg and some weakness in my right ankle, causing some problems walking and forcing me to cut way back on my biking and to go to traditional flat pedals as I could no longer work my foot well enough to use single entry clip-in road bike pedals. Started Ampyra March 8, 2016, and within 48 hours, I noticed a HUGE difference in leg function. It's now been two weeks, and I'm back to using clip-in pedals (MTB dual entry, alas) on my bike and up to 30 miles per ride at 15 mph, up from 20 miles at 10 mph. That's a true quantitative measurement of improved function. Don't wait to try this stuff."

• Dit...
• Taken for 5 to 10 years
• August 29, 2016

"20+ years of RR without awareness/disability. When it changed to SD with dizziness, poor balance, many falls, intense fatigue, foot drop, diminished walking, muscle spasms, bladder & bowel issues, MRIs confirmed without argument. I participated in a Canadian study of 'Fampyra' with measurements of ability before and after administration. Improvements were marked, and I certainly couldn't deny the disease. Progression is manageable. When 'Fampyra' was approved for use by Health Canada, I continued on it. My insurer does not cover it. I'm so grateful to be able to continue. The neurologist remains satisfied, and so am I. It's not a cure. Comments from other users encourage physiotherapy to 'keep and improve the ability I have'. Thanks, I needed that!"

• The...
• Taken for less than 1 month
• December 15, 2019

"THIS DRUG WORKS! Originally diagnosed with RRMS in 2016, then PPMS in 2019, my walking and balance had degraded to requiring a cane at all times. Further, my stamina became non-existent. During a drive to see family after my first two doses, I had to pull over to, ahem, answer the call of nature. I walked unaided down into and back out of a ditch. I thought only about watching my step. I didn't fall or falter. Later that evening, I walked nearly half a mile without stumbling or bracing myself once. I carried my cane, but did not use it. I do not know if my improvement will continue or if this is as far as I can go. Either way, I am tremendously happy with the efficacy of the drug and will keep taking it for as long as I can."

• Dia...
• May 16, 2015

"2 days on Ampyra and already noting difference. As I get close to the end of the 12 hours, I do see a lessening of benefits, and I have also experienced vertigo while lying down. But overall, I am looking forward to seeing how much my walking and standing improve."

• KMc...
• Taken for 1 to 6 months
• May 27, 2018

"I am a 58-year-old female. My primary progressive multiple sclerosis (PPMS) began 11 1/2 years ago. I was finally diagnosed about 2 3/4 years ago. I use a walker around the house and for short distances. For longer distances, I need a wheelchair. I tried Ampyra for 6 weeks and decided to go off it today. It did not help walking or anything else. Further, I had gotten rid of the tingling and L'Hermitte's syndrome through a change in diet after I was diagnosed. Once I started Ampyra, both of those came back, as well as my menopausal hot flashes, which had subsided. In addition, with the Ampyra, it takes 1 1/2 hours to fall asleep even with prescription sleeping pills, and I also have back pain. I know 3 men who have been taking Ampyra for 7 years, and they swear by it, but it was a total bust for me. Even just a little improvement in walking would have been worth the side effects, but I didn't have that. :-("

• Anonymous
• May 25, 2011

"I have SP Multiple Sclerosis, and when I first tried Ampyra, I thought it was a miracle medicine. I have now been on it for over 1 year, and the positive effects have unfortunately diminished. I have had shoulder pains for some time, and I am going off Ampyra for 1 week to see about any changes."

• Dia...
• Taken for 1 to 6 months
• June 16, 2015

"It has been a month now, vertigo gone after a few days, a couple of nights pain in my upper arms, but not every night. Overall, I seem to be able to do more, but not as much as I want. Hopefully, this will continue to get better."

• KT-...
• January 31, 2018

"Like many other MS patients, I find Ampyra to be a miracle drug. It's corrected my drop foot and improved my energy levels and cognitive functioning. However, Acorda Pharmaceuticals has DISCONTINUED its zero pay and $40 co-pay assistance programs (it does NOT say this on their website). When I attempted to get my Ampyra refilled earlier this month, my specialty pharmacy told me the co-pay is now a whopping $500/month. I contacted Acorda, and they confirmed - Acorda will only cover up to $1,000/month of the $1,500 they charge for Ampyra. Acorda does not have the patient's best interests at heart; this company is only concerned with its bottom line. Now thousands or even millions whose lives are dramatically improved through the use of this drug may no longer be able to afford it. While I rate the drug itself a 10, I have to rate Acorda a big fat ZERO, hence my overall rating of 7."

• Mir...
• Taken for less than 1 month
• July 13, 2022

"My day is great, and I must share this news with you guys in hopes that you too may have these awesome results as well. This is day 5 on Ampyra. OMG, OMG, OMG, this is really the miracle pill for me. Just last week, I had to use my walker just to get to and from the car. After today, I'm only hopeful that I'll keep improving. I hadn't used my walker for about 2 days now. I definitely noticed me getting up and down the steps a lot easier. I couldn't lift my right leg. Since starting this medication, I am definitely improving. This is how I'm calculating how well it works for me. My toes in my right foot are dead, I can't wiggle them, spread them, etc. After day 5 on Ampyra, I was finally able to spread them. They say give it 4-6 weeks, I can only remain optimistic that I'll continue to get better. I am not exaggerating, I'm in complete disbelief at this medication. It is truly amazing! Ampyra makers, you're the absolute best ❣️"

• kko...
• February 23, 2018

"I've had a decent experience with Ampyra. I improved a little, enough to make it a little easier to care for myself. Recently I received no more help with Ampyra price. I have Medicare Part D, but my copay is $2,700. Ampyra has offered no other help to get me this medicine. I was told I'm off the assistance program because they are coming out with the generic. The problem with that is, why kick your people off your systems program before you even have the generic version out? I'm very upset with having to stop taking this medicine. I saw a minimal improvement, but I am so desperate for any help I'm willing to take the medicine, and now I can't afford it. The world we live in today is very sad when a medicine that actually shows any benefit for a person is so incredibly costly you can't afford to take it. I have to correct myself, they told me to try other resources for help with the copay, but I am not eligible for any of those. So I have taken a downward spiral and no way to get this medicine."

• Rae...
• September 14, 2019

"I've had MS for 5 years now. I was diagnosed with RRMS but think I'm much worse. I know I had something going on as far back as 2010 (9 years ago), but I was unable to get a diagnosis until 2014. Because of this, I have many lesions. I started taking Ampyra 2 years ago. I felt if it helps me a little bit, it would be worth it. Well, it helped me a little bit. Enough that, 2 years later, I had to go without for 2 weeks. Insurance reasons. When I came off of it, I noticed the difference. So now I have to start taking the generic now because of my insurance. (Dalfampridine) is the name. So it is the same actual drug, dalfampridine, but made by a different company which makes it at a cheaper price. My generic brand is made in India."

• Buc...
• January 28, 2018

"I began taking Ampyra last Monday. By Thursday, I noticed I had more strength in my legs and was able to be on my feet much longer without having to find a chair before my leg gives out. My walking is not what it used to be, but improved. I hope it keeps improving. I don't think I have any side effects directly related to the Ampyra. Go for it!"

• Jen...
• Taken for less than 1 month
• November 27, 2018

"I started Ampyra 2x a day. For 3 days, the jittery feeling, insomnia, and loss of balance were too much. They suggested I take it once a day for a week or so to allow my body to get used to it. Tonight is the first night I took it twice after a week of once a day. I’m completely jittery, it’s 11, and I feel my night of non-sleep ahead of me. I’m not sure this drug is for me. Feeling frustrated."

• Hea...
• Taken for less than 1 month
• August 21, 2023

"I was diagnosed with PPMS in 2016 when I was working full-time. I'm now on FTD and getting weaker each year. Over the past year, I've been getting noticeably worse, depending on my power chair more and more. My MS Clinic suggested I consider taking Ampyra a while ago, and as it was getting nearly impossible to stand for more than 10 seconds, I decided to give it a try. It's definitely helping my mobility. After 3 days, I noticed an improvement. I did have a bit of nausea the first 3 days, but no more. I have to take fiber daily to avoid constipation, but presently I have no symptoms and am using my power chair less and my walker more. I have noticed a bit more mobility in my core as well and can clean places I haven't been able to reach for quite a while. I overdid it a few days ago by cleaning both bathtubs, and I seemed to revert. So I am taking it easier now. I'm on day 13 of 10 mg twice daily. I hope my mobility will continue to improve as I concentrate on walking more."

• DOR...
• Taken for 10 years or more
• February 2, 2023

"I have had multiple sclerosis since 1994 when I was 37 years old. I am now 65 years old. I have used Ampyra since 2010, and now I use its generic form, Dalfampridine. If I miss a dose, I notice a significant difference as I become very weak. Without Ampyra, I would not be able to stand up and use a walker to go to the bathroom. Although I have gradually worsened over the past twelve years and use a wheelchair sometimes, I still take Ampyra as it provides good benefits. I will continue to stand and walk for as long as I can. I have experienced no side effects from Ampyra."

• K-m...
• Taken for 2 to 5 years
• June 8, 2014

"Started taking 3-4 years ago in early 50s while transitioning from RR into SP. Early on, saw subtle improvement with only mild constipation, but was unable to go without AFO. Past year in SP, balance and gait worsened, where use AFO and cane full-time. Decided a month ago to stop taking. Balance much better. Gait seems unaffected. Living with SP is definitely different from RR."