Ampyra Forums

I got off ampyra after taking for 3 months because I felt it did not help my walking and caused other problems. I was not happy putting up with insomnia but was willing to tolerate if it was a tradeoff with walking. Since being off the medicine for one week my walking is terrible and balance worse than when I started. Has anyone else noticed problems when they stopped taking medicine after a 3 month period. I still feel the ampyra did not help but do not understand why I am worse off now than when I started the med. ## Sounds like we had the same results. I tried Ampyra for three months, during which time my walking actually seemed to slow a bit. I stopped using it when I got a nasty UTI, which gave me symptoms similar to an MS exacerbation. It took two rounds of antibiotics to finally ...

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I took Ampyra for 9 weeks--twice a day for one week but the insomnia was so bad my neurologist took me off for 1 week, then 1/day a.m. for two more months, but walking was worse, not better, I thought possibly because I was getting so little sleep Since stopping it 8 weeks ago my walking has gotten significantly worse. Over the past several years, my MS has been stable according to MRIs with walking deteriorating very slightly, but after stopping Ampyra, walking and balance are significantly and increasingly worse. I hope my MS has not kicked up again after all these years. In addition to insomnia, the most significant side effect was terrible stomach pains, way beyond the "indigestion" listed in the side effects, and I lost several pounds I didn't want to lose. That pain en...

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This call center is HORRIBLE - don't they understand they are dealing with people with MS? What JERKS ## Hi, Deb! Very sorry you had problems when you called. Where they generally unhelpful, uniformed or was there some other problem? I've found that when I call the one I use, they are usually very helpful. I never had a problem until recently, when they were switching to a different company to fill prescriptions. Do they have a website you can use, rather than calling? ## I had the worst experience with the Ampyra patient assistant. It was the only phone number I had. My insurance specialty pharmacy sent out my Ampyra and teffedera in a regular cardboard box. Both medications arrived in bad shape. It is the end of June. Which means it is hot. The bottles were too hot to even tou...

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It worked for me initially for about 2 months, but experienced a sharp decline in my walking. Now my walking is wobbly with foot drop. Tripped a few times and fell. I've stopped taking it for the last 3 days and my whole body is drained and have no energy. Will it get better over time? I don't mind if it takes a longer time to recover as long as it does. I'm not expecting a 100% to pre-Fampyra state.

First of all, let me say that taking Ampyra has DEFINITELY helped my walking. I haven't felt the need to use my cane since almost day one. Speed, gait, balance all improved. Since insomnia has been an issue for me all my life, my Dr. suggested I just take one pill in the morning. I've been taking Ampyra now for 4 months, and still have only taken one pill a day, usually around 8am. That seems to working very well for me - is there any reason I SHOULD be taking the evening dose? Most evenings, I'm not on my feet much, so there doesn't seem to be much point. Your thoughts? ## Hello, Julia! How are you doing? I am so glad that this medication is working so well for you. If one pill is working for you, then no, you should go with what your doctor instructed and stick with yo...

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My aunt stopped taking Ampyra this am per her doctor. Dobyou know-how long before it will be out of her system. ## Hello, Suzanne! How is you aunt doing? It really depends on which aspect you're talking about, because there is a difference between when it may be processed out of her body, and when any unwanted side effects might go away. It only takes about 24 hours for it to be processed out of her body, according to the FDA, but some side effects could still linger for a week, or more, after stopping it. What caused her to have to stop taking it? The FDA lists its typical side effects as possibly including nausea, dizziness, headache, dry mouth, constipation, and itching.

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I have been taking Ampyra for 4 days. I have noticed a decrease in fatigue but headaches daily. The question is will they eventually go away on their own, or do I skip a day and see if they stop or quit til I see the doc ? ## Since last posting I have reduced amount to 1 per 24 hr. headaches are still occuring.2 Excedrin migraine seems to help.I have noticed an improvement in energy. ## I have been taking Ampyra for 4 days now I am feeling like the walking is slightly easier. My backpain has increased slightly but it isn't intolerable, it's ignorable. I'm liking. I have posted and will continue to post updates about my experiences with it on check it out if you'd like ## I have been taking Ampyra for a little over two weeks now, and I have experienced a marked improvemen...

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I quit Ampyra as I only saw a difference for a bit of time. I'm on LDN now and getting my dosage correct. Things improving, it takes time. ## I started taking ampyra 2 1/2 years ago, and initially I improved a lot, because of a mix up with the third timed walk, my insurance did not approve the refill for about a month and a half. I deteriorated rapidly and in fact began walking WORSE than before I started taking it initially. That month and a half without it, I started using a cane and although I improved a little after starting up again, I continue to need a cane. When I don't take it on time, I see a small difference in my ability to walk. I take it it in order to walk marginally better, but I'm way worse than I ever was before it. Knowing what I know now, I would have bee...

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My level in this MS journey is - very weak and stiff on my left side of my body. I use a walker and wheelchair when going places. I started Ampyra about 3 months ago. Within 2 days I really started to feel it! I was able to turn over @ night in bed (I usually can't), I had more strength when I'd get up from a chair or sofa. Then about 3 weeks or so into starting Ampyra I had so many stressful situations happen in my life. Then I lost every good symptom relief I had. I know, I know... the drug works for some better than others.. blah, blah, blah. I just wanted to know if anyone out there can relate and if so, what was your outcome. Thanks =) ## Ampyra is a very new medication, just recently approved by thee FDA, it contains the active ingredient Dalframpridine. It is most commonl...

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was able to walk unassisted early in the day but had to use a walker later in the day. Neuro prescribed Ampyra, but when balance issue prevented walking unassisted at all after about a week of use, Dr. said to discontinue immediately. Balance issue continues for almost a year after discontinuing the drug and cannot walk unassisted. Could Ampyra possibly cause some lingering issues, even after its use has been discontinued for a long time? ## Hello, DJ! How are you? I'm more inclined to think it's due to an MS flare, rather than the medication, since it was discontinued so long ago. The FDA lists its typical side effects as possibly including nausea, insomnia, headache, weakness and stuffy nose. Are you on any other medications? ## Thanks for the response Verwon! The company (and...

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have been taking ampyra 10mg twice daily for 6 wks. the headaches went away after 4wks,the dyspepsia is tolerable but during the last 2 wks bladder control or rather, lack of it, has become a huge issue for me. recently I had 2 episodes of urine incontinence, I can live with the other side effects as a trade off for the improvements in walking but cannot face living in fear of wetting myself in public or having to wear protective products. before ampyra I had minor urgency/ hesitancy episodes but now it's horrible. considering stopping ampyra .advice? ## Hello, Jane! How are you? I'm sorry about the problem that you've had, I agree, that would be horrible. Have you consulted your doctor? You may be able to take something to counteract this side effect, rather than give up th...

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I have been living with ms sense 1991. I've had my up and downs through the years. I've had plenty of falls. Broke my left ankle, then almost a year to the exact date later I broke my right foot. My walking has gotten progressively worse and if tried many kinds of treatment both injections and pills. The latest being ampyra. Nothing seems to work. I also have arthritis in my spine and swollen ankles from high blood pressure so my mobility is very limited. The medications I see advertised for ms seem to be for remitting ms. Not progressive ms which I have now. I'm at a lose of what to ask my doctor I should try now or should I give up and let it take its natural course.

I was diagnosed with PPMS. My right leg feels stiff when I walk. I was thinking that Ampyra was intended for the other types of MS. But reading of the side effects, I'm doubting taking it. I am working on getting a Walk Aide. It works wonderfully for me. It's just expensive. So would Ampyra be right for me? ## Unfortunately, the information in your post is very limited, which makes it hard for anyone to advise you on this. Learn more Ampyra details here. What medications do you currently take? Any form of MS can be touchy and unpredictable to treat, so all must be handled with care. Have you consulted a doctor about using it? ## Thanks for your input Verwon. I didn't think about the other meds. I take Baclofen for my spasticity and LDN. I was taking Rebif, but my insurance s...

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istarted amphyra six weeks ago after completing eligibality test over an initial four week trial super vised by my neuro the out come of the walking test was a thirty percent improvment in walking speed also some balance and cognitive improvments icommenced full time use two weeks later and apart from the exorbiant cost 195 dollars every four weeks i fully recommend any one prescribed it persist with the trearment ## Hello, Ross! How are you doing? I'm so very glad that this medication is working for you. Have you had any problems with the side effects that the FDA lists, such as nausea, bladder pain, forgetfulness, depression or muscle cramping?

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i am now on my 2nd week of taking Amprya and everyone is noticing my walking better.the left drop foot though is a drag (no pun intended lol) but has gotten alittle better my over all walking has improved.my side effects of pain in throat and neck was 2 days,my abdominal pain was 2 days,the itching and tingling was 2 days and all so far passsed.the numbness i normaly have in both my hands that was an MS episode that i never recovered from,was alittle more enhanst,but i would rather deal with all that if my walking approved not that im sprinting over hurls,but feeling really good so far!! good luck to everyone who is taking it. ## That's great, I am so glad that it's working so well for you. So often what gets posted on sites like this are just the complaints about a certain medi...

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This call center is HORRIBLE - don't they understand they are dealing with people with MS? ## Hi Deb, I'm sorry to hear about the bad experience you had with the Ampyra patient assistance program. What exactly made it so horrible? Could you elaborate? Any information or details you can provide could very well help others who are experiencing similar issues. Thank you! ## Patient assistance for Ampyra SUCK!!! Two months and I still don't have an application!! Had 2 different people call and tell me they were sending out apps still haven't received either. If your going to screw me you should at least kiss me!! ## I experiencing the same crap. But it's between the insurance the foundation that gives money and all the bs in between. I'm on this site because I've...

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I have SPMS and have been taking Ampyra for a month. in the beginning I felt nothing but the side effects of lower back pain and increased balance issues. Those stopped, and I thought maybe it was helping me walk a bit stronger. Then the knee pain started. I didn't connect it to Ampyra at first. But I've found it listed as a side effect in a users forum. getting up from chairs is very painful and I believe the pain has made my walking worse. this is counterproductive and I wonder if I should continue. ## Knee pain isn't listed among the side effects reported by the FDA. Back pain is, as well as insomnia, dizziness, headache and constipation. Have you consulted your doctor to be sure? It would be best to have this checked out to rule out other possible causes. Is this the onl...

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Been taking ampyra for. 4 days now. I have never had pain with my ms , just mobility & cognitive issues,occasional swallowing difficulty. Since taking ampyra my legs are aching enough to where I feel like I need to take something. Also my lips are trying to go numb. Anyone else with these side effects? ## Yes, those can be side effects of taking Ampyra, along with MS relapse, seizures and balance issues. They should improve in a few weeks, after your body gets used to the medication, but you should have this checked out to be sure. Is there anything else I can help with?

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My neuro is putting me on ampyra, and I am excited about this. My biggest MS problem is lack of balance. Anyone seen a difference with balance issues on ampyra or its compouding equivalent? ## Ampyra contains the active ingredient Dalfampridine, it has been proven effective at managing some MS symptoms. This is a very new medication, but we have a few posts on it from people who have been using it, perhaps someone there has posted more information, most have said they've gotten good results from it. Does anyone else have experience using this? ## Hi Callie. I have been on ampyra for about a week and a half. I still cant decide if i see a difference yet. I did notice that my bladder issues have been a little better and i seem 2 be a little steadier. Balance is my main issue too,so i ...

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I took my first dose of ampyra today and after 7 hours I had a terrible reaction. I have bad neuropathic pain in my legs, and about 7 hours after the dose, I felt like the neuropathy had been kicked up about 100 times. I literally felt like my legs were on fire. I jumped in the pool and immediately called the neuro's office to report the problem. I was told to stop it immediately, which I am very disappointed about. I had an allergic reaction to Tysabri, couldn't take Rebif, have problems with high dose steroids, and now this. I am pretty much to the secondary progressive stage, although I had a massive attack 15 months ago, and am now on Copaxone and Avonex duo therapy since 2/09. I was really hoping Ampyra would help with the walking, (now on a walker) but because of all my al...

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