User Reviews for Dalfampridine to treat Multiple Sclerosis
Also known as: Ampyra
The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.
Reviews for Dalfampridine
Ampyra (dalfampridine): "I started on Ampyra 7 weeks ago and have not noticed much difference. I am 59 with RRMS (relapsing-remitting MS) . It is hard to rate because I am not sure. I am leery about stopping because I had high hope's for this drug. I may stop for a couple of weeks then try it again. It seems like it helps many so I am hoping this will be me the second go around. Peace and happiness"
Ampyra (dalfampridine): "I'm 53 and started on Ampyra 20 months ago and about 4 months I switched to the generic (Ascent) - seams to be no difference except that the time release my be a little different. As far Performance, the benefits peak for me at hour 8, with the medicine the using a treadmill it takes me 10 minute and without the same incline and distance is 12 minutes - starting out at the same be slowing faster without. Side affect are minimal but I do skip when I can as this to lessen the likely hood of serious side affect like seizures - I take 12 a week and I have a full time job. Also beyond the medication rest, stress reduction and diet - try the Wahls - improve symptoms - Best Always -hope this helps"
Ampyra (dalfampridine): "I started Ampyra 2xday, 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."
Ampyra (dalfampridine): "My daughter has had MS since 2002, she was 20 when diagnosed.... ampyra has helped a lot but now she has started having seizures. This is a side effect. I'm not sure this caused them but be careful"
Ampyra (dalfampridine): "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. :-("
Ampyra (dalfampridine): "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 take 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 co-pay but I am not eligible for any of those. So I have taken a downward spiral and no way to get this medicine"
Ampyra (dalfampridine): "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."
Ampyra (dalfampridine): "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 with out 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!"
Ampyra (dalfampridine): "I have been taking Ampyra for 5 or 6 years. It has greatly improved my walking and my cognitive ability. It helps me to continue to be a productive person. I would be afraid of a generic. It is a serious medication I feel I would be taking a chance on my health and abilities. I have talked with my Doctor and he agrees."
Ampyra (dalfampridine): "Hello. It's been 6 months since I've started taking Ampyra. It is still a miracle drug, and I would recommend it to anyone with MS. The only side effect I've had was slight back pain. That side effect only lasted about 2 weeks. I've noticed a difference in my walking immediately, and still stand by this med. I do notice if I forget to take a pill, then I have to wait to get back on schedule. that's the only complaint."
Ampyra (dalfampridine): "**This is a missing side effect that should've been noted in the prescription information! *** For the first two years this medication came out I continue to use it along with my disease management drug. I was taking tecfidera. These two medications combined drastically slow down your lower intestinal. Ampyra lists constipation as a minor, less common side effect. After some research with my doctor he researched the medications in medical journals and the chemical compounds and he thought two should not be taken together for this particular reason."
Ampyra (dalfampridine): "I was diagnosed with MS in August 2016. I am a dance instructor, and noticed that I was limping, especially after class. I had foot drop, numbness, Charlie horses and cramping at night. I have 2 small children who keep me active as well. MS totally changed my quality of life. I am taking Copaxone 3 times a week, but it doesn't help with the symptoms. I read about Ampyra, and because my main gripe about MS is the way I walk, I decided to ask my Neurologist if I could try it. I've been on it for a week and already notice a difference. I'm hoping with time that it'll do more for me. I chased my son around the park this weekend and noticed a huge difference when I taught class yesterday. Very glad I tried it!"
Ampyra (dalfampridine): "Ampyra is a MIRACLE for me. I have been on one pill a day for exactly one month. I have had MS symptoms since 2005 but was not diagnosed and put on Copaxone until last year. I have experienced two years of extremely heavy legs while just standing for more than 15 minutes, expecially my left leg. My life had changed dramatically. Having to use a rollator when I left the house. My neuro finally prescribed Ampyra after asking for the last two years. After two weeks, I noticed that my stamina was much better. At one month, I could not believe it! No more heavy legs at all. I could stand and do housework for more than an hour. No side effects. I take one pill about 10 a.m. It runs $40 for a 30 day supply. Wonderful pill so far"
Ampyra (dalfampridine): "I am very disappointed. I had tried Ampyra about 3 years ago and found no effects at all. At the urging of my neurologist, I tried again this year. For symptoms, I am taking Provigil & Baclofen. I take Copaxone as a disease modifying agent. Previous to restarting Ampyra, I was doing 1/4 mile on a treadmill 3 times per day plus one mile on the elliptical at night. My legs felt very heavy on the first day of Ampyra. I might have done just one rep on the treadmill. I thought possibly that my body was adjusting to the medicine, so I gave it about one week. I found it difficult to do my daily treadmill. Legs also were throbbing slightly at the end of the day. This medicine had a negative effect. I am out a $300 copay."
Ampyra (dalfampridine): "MS since 2002- 58 year old with poor balance , weak right leg and foot drop, I use brace, rollator and wheelchair. Started Ampyra 6 days ago, the first 3 days or so I was mildly lightheaded and it seemed the neuropathy in my legs was increased, but I was also feeling sensations I haven't felt in long time! Day 4 I felt a surge of energy and was all over the house. Today day 6th I was able to walk more than I have in years without crying of exaustion or my legs giving out, legs so much stronger! I am beyond exited that this is all happening so fast and very happy I got brave enough to try Ampyra. And yes around the 11th hour you know when medication is wearing off, so if you start Ampyra carry pills with you :). Good luck!"
Ampyra (dalfampridine): "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 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. I'm so grateful to be able to continue. Neurologist remains satisfied and so am I. It's not a cure. Comments of other users encourage physiotherapy to "keep and improve the ability I have". Thanks, I needed that!"
Ampyra (dalfampridine): "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 work with a urologist to control them. This drug saved my life."
Ampyra (dalfampridine): "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 @ 15 mph, up from 20 miles @ 10 mph. That's a true quantitative measurement of improved function. Don't wait to try this stuff."
Ampyra (dalfampridine): "Ampyra is the only drug that has been helpful to me with the exception of Tysabri which I was forced to quit. I have been diagnosed with MS for over 10 years and have gone from RRMS to SPMS over the past three years or so. I read about Ampyra a number of years ago but was afraid to try it because of all the side effects. I wish I had tried it along time ago! I used to walk hugging the wall for balance and sometimes used a cane. I have only been on it for two weeks now and my balance is hundred percent better. I do not use the wall at all. I also have a left arm that wants to contract up so that it I hold it in front of my abdomen. I have noticed in the last day or so that my arm no hangs almost straight. Don't be afraid, try it!"
Ampyra (dalfampridine): "Ampyrya 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!"
Ampyra (dalfampridine): "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."
Ampyra (dalfampridine): "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 the vertigo while lying down. But overall, I am looking forward to seeing how much my walking and standing improve."
Ampyra (dalfampridine): "I was diagnosed with MS 2006. I found myself with a loss of balance. I fell so much at my work I gave my co workers at the gym score card as to how I fell. I have a sense of humor which helps me get through this new found life. My dr told me about ampyra after I started taking this drug my falls decreased. We haven't had to score any of my falls in over a year."
Ampyra (dalfampridine): "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!"
Ampyra (dalfampridine): "I've been on Amprya almost a year and still able to walk a short distance without assistance. Maybe 3 steps but its better then not moving."
Learn more about Multiple Sclerosis
IBM Watson Micromedex
Symptoms and treatments
Mayo Clinic Reference
ICD-10 CM Clinical Codes (External)
More about dalfampridine
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- Drug class: miscellaneous central nervous system agents
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Other brands: Ampyra