AMPYRA Improves Walking In Multiple Sclerosis Patients
I wanted to share an update on my previous post regarding the new drug, AMPYRA. I am excited to share this ground breaking news with you, my friends, and look forward to learning more about this medication. I would especially like to hear from anyone who may have some experience with it, and how it goes.
March 1, 2010 -- Acordia Therapeutics, Inc. announced that AMPYRA (TM) (dalfampridine) Extended Release Tablets, 10mg is available by prescription in the United States and Puerto Rico. AMPYRA was approved on January 22, 2010 by the U.S. Food and Drug Administration (FDA) as a treatment to improve walking in patients with Multiple Sclerosis (MS). This was demonstrated in clinical trials by an increase in walking speed in some patients. AMPYRA is indicated for use in all types of MS, and can be used either alone or with existing therapies, including disease-modifying agents. To learn more, please visit Acorda Therapeutics .
The most common adverse events (incidence ≥2% and at a rate greater than
the placebo rate) for AMPYRA in MS patients were urinary tract infection,
insomnia, dizziness, headache, nausea, asthenia, back pain, balance disorder,
multiple sclerosis relapse, paresthesia, nasopharyngitis, constipation,
dyspepsia, and pharyngolaryngeal pain (6.1).
For a full list visit FDA.Gov
To report SUSPECTED ADVERSE REACTIONS, contact Acorda
Therapeutics at (800) 367-5109 or FDA at (800) FDA-1088 or
www.fda.gov/medwatch
What I am looking for is a blog where MS patients using Ampyra can talk with one another about how the medication is working. I would love to talk to others who are now using Ampyra. Is this blog such a forum for exchange of users information?
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I stuck with Ampyra for three months, hoping to see some improvement, but I went from using a cane to a walker, and my neuropathy became much worse. I was weak and just felt crummy. Then I started feeling electrical rushes down the weak side of my body. I had this happen a few times whenever I put my head down, but then it started to happen when I wasn't moving at all, such as lying in bed before falling sleep. I started having more bladder control issues, which for me, was the final straw. I've been off Ampyra for four days and have started to feel like my old self. My neuro has put me on steroid infusions since I quit, just get back to my pre-Amprya condition.
I have been on Tysabri since January 2003 and my MS has stabilized, with no adverse reactions. I guess Ampyra is not for me but I had to try.
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My husband has MS and started using Ampyra a couple of months ago. At first we started to see minimal improvement although he felt he was doing much better. After a great weekend, going out and having fun, he had multiple falls, and began to get weak. We thought is was because of all the excitement of the weekend and that it might be fatigue. He took the day off from work to rest. The next day he was very wobbly and he had declined from there. Now after being off of Ampyra for 1 1/2 he still is not walking, has bladder control issues, and involuntary muscle contractions. He is, however, sleeping better and not having the dizziness or heartburn/indigestion anymore. We are anticipating his neurologist starting the steroid infusion on tomorrow to hopefully get him back to his Pre-Ampyra state as well.
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Nancy, I am also searching for such info. Have you found anything as of yet?
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I appreciate the work that you guys do in helping other people who happens to have Multiple Sclerosis. It is amazing what you guys do in creating an awareness about this condition. More power and keep the fight.
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Most important drug I have ever used. It not only makes my walking better, but improves every aspect of my disease...and I have just about every problem you can have. I was on 4-ap (the compounded version for 1 year) Both drugs helped a lot, but Ampyra is far more stable and Acorda has an automatic copay assistance program that makes their drug cheaper than the compounded 4-ap. Everyone should try this drug despite the type of MS or your current status unless you are prone to seizures. After you get used to the drug, the only thing you will notice is if you wait too long to take it, the effects wear off. Hope this helps!
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On Tuesday June 8th, I will be receiving my first 30 days supply of Ampyra. I am excited to find out the effects it will have with me. I vow to myself to walk daily the tread mill and since it is so hot here in CA at this time, I want to be measured with my hopes, but still want to have them. Hopefully this will be the start of a change for the good. Robert's note (on 6/3) really helped give good insight!
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Hi!
i AM AN MS PATIENT FROM POLAND (UE). I CAN'T BUY AMPYRA FROM THE US BUT I'LL BE INTERESTED TO COOPERATE WITH AN AMERICAN TO BUY IT FOR ME, I MAY FINANCE SOME FOR HIM...
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Thank you for your inquiry. Due to legal considerations I cannot advise you to obtain drug via these means in the United States. A better alternative may be to attempt to obtain the drug from Canada or Mexico.
Thank You.
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Hi, Read your request. May be able to help you. Please keep in touch, Jim
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Hi,I can help you with Ampyra
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Hi Frank, Great! please contact me at ms2002live@gmail.com
thnx
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I tried Ampyra on Sat. morning, it felt like I had drunk a pot of highly caffeinated coffee. I felt bad most of the day and didn't take it after that. The next day I was amazed, my hands weren't numb, my balance was so much better, my walking way improved. The effects stayed for over 2 days. I feel like maybe a lower dosage (not available from Acorda) would be better. Any thoughts?
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I had the same side effect, but the fogginess went away after taking Ampyra in 2 or 3 days. I guess your body needs to get used to it. Hang in there!
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Today, June 18, 2010, I just received my first shipment of Ampyra. I was diagnosed in 1996, first syptoms in 1991, my mother had MS and my brother has MS. I have been doing well, but within the past 5 years, my walking has gotten much worse. I have a slight limp and can walk a few blocks w/o much incident. Over that, my walking gets very poor. I go to the gym every other day and am as strong as I was at 20 (I'm 45 now), but my stamina and endurance at the gym is the pits and, after a workout, my walking is really bad. No cane yet, but I'm sure people wonder why not. I'll post in a few weeks.
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Paul, you are a carbon copy of where i am with my MS. I was just prescribed Ampyra and am a little skeptical. I am very concerned with the reported side effects. Your input would mean a lot to me. Look forward to hearing from you. Marc
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Hi Paul & Marc, I am another CC with you guys. I am wondering how ampyra have work so far. I will be getting my supply very soon. sure looking forward to sustain my walking. Any feedback is appreciated.
Emily
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Due to MS, my feet have been numb and tingling for the last 2 years. Steroids no longer help. I started the Amprya 3 days ago, within 2 doses, I felt my feet for the first time in 2 years!! I will say though,if I have a very stressful, exhausting day, the tingling and numbness comes back. I am hoping that once I get a few doses into me again, these feeling will be relieved again. I was ecstatic a few days ago, I thought my life was back. Now I am scared that I lost it again!!
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Within the past year my walking has become increasingly difficult as I've developed drop foot and use an AFO and can no longer lift my knee. It's like I'm hiking the hip and walking with a stump. I'm so optimistic about this drug and intend to talk to my neuro next month. Am I overly optimistic to think that I'll be able to use that leg with this drug? Has anyone on the drug noticed an improvement in the use of the weak leg or is it just a matter of being able to walk an extra few feet or so? Thanks for your help.
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Christine, the only thing I can say is that when I first read about this drug was when it was approved by the FDA,the example they gave was about this women who was a tri-athlete, was eventually in a wheel chair by the and of of the of the first year. She started taking it, eventually was out of the wheel chair, was able to do Disney w her kids, w/o a wheel chair, and eventually did 2 5-mile hikes. My guess is that she was one of the trial patients, since it was just approved by the FDA this past January. My neuro said they since they have gotten this med, he has over 100 patients on it with good results. My only guess is if that if this women had this major change, anything is possible. Good Luck to you and I will keep my fingers crossed!
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Thank you so much Diane. This is encouraging.
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Cristine, I have just completed my first week on Ampyra. I have foot drop on both legs and use AFO, canes and a wheelchair. All my symptoms effect my lower extremities. Classic male PPMS. Twenty years of steady decline. Yesterday I walked 10 steps with no aids. It seemed unbelievable. My nine year old son started to cry. He has never seen my walk on my own. I have more energy in the afternoon. Both legs are stronger. This may be huge for you. Good luck.
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Is anyone suffering from insomnia from taking Ampyra? My husband started 4 days ago and is having a terrible time going to sleep and staying asleep. If so, will the symptom subside after a while?
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I started Ampyra 5 days ago and I have noticed suttle changes. I'm not as fatigued, my leg strength is better (left leg weakness)however I haven't noticed too much change in my balance. I'm hoping I will get better day by day.
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Dave,
That is so encouraging. I hope you continue to see improvements each day.
Thanks for your reply as I'm more optimistic about this drug and look forward to hopefully trying it soon.
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I started Ampyra approximately 2 weeks ago. This Sunday I walked 15 ft with the use of my walker. This is a miracle for me. Prior to this med. I was lucky if I could take 2 very difficult steps with my walker. During PT today my therapist was amazed at the marked improvement, so much so she emailed my nuerologist with the results. Heat still affects me tremendously, but my bladder symptoms appear to have also improved. I fervently hope and pray this improvement continues. While I know all diseases are horrible, MS took my independence and career and there was nothing I could do about it, until now! I hope that this drug becomes more affordable so that it is available for those that need it. The only side effect I noticed was some pretty severe nausea the first couple of days. It has resolved, and I have not had any others. Good luck to everyone out there and
don't give up the fight!
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I was diagnosed with PPMS in 2000 and began Avonex at that time. I've had continual deteriation, although rather slowly. Four months ago, my neurologist prescribed 1.5 mg of LDN with no results. He upped that to 3.0 mg and still no change. Now I have added the Ampyra for one week with no change. I was wondering if anyone else is taking Ampyra in conjunction with LDN
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What is LDN? Have you tried Tysabri? I have heard about amazing results with that. I have spoken to others, and have heard that acutally it can repair! I am on Copaxone,and talking to my Neuro this week re Tysabri.
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LDN, also call Low Dose Naltrexone, originally used in high doses (40 mg) for addiction. It has been found successful in treating MS, e.g. improved symptons (some had complete remission). At 3.0 mg, I still have not had any improvement, but my dr. will most likely increase the dose to 4.5 mg, that's the maximum perscribed for MS. Still no improvement with the Ampyra either after three weeks. I don't take Tysabri because I'm on Avonex,which has had bad reactions for some. I don't want to risk it.
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I had to discontinue the Ampyra. After a few days, my MS symptons became much worse; increased fatigue and weakness - almost unable to walk at all (more need of wheelchair and scooter). I stuck it out though and continued the Ampyra for three weeks with no improvement. I quit the Ampyra and within 4-5 days, my condition improved. After 10 days off the Ampyra now, I'm just about back to my old self (or pre Ampyra self). Ampyra is good for some, but just not meant for everyone.
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I have been reading a lot about LDN recently. I was told it was ok to mix with ampyra but told it was not good to mix with interferons. How are you doing on LDN and Avonex? I hope you have had improvement, I may be starting LDN soon and I could use all the feedback I can get. On another note I have been taking ampyra for about 6 weeks with very little improvement. thanks in advance for your response. Take Care
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hi, I have been taking LDN since 1/1/11. I am not sure if it is working or not (truth be told), but I sure hope it is! other than the LDN, I do homeopathy, and before that I did regular acupuncture (I was diagnosed w/ M.S. in 1996). I have not had any new symptoms or exacerbations since I began!other than that , I have never taken anything allopathic for the disease, but today is the 4th day that I have taken 1 Ampyra. so far so good w/ this med. I am taking it b/c walking has been a challenge for me lately-- but I will make a separate post about this. please feel free to get back to me if you have any more questions regarding LDN. and best of luck to you.
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My husband started the drug in May and had wonderful results then after almost a week, he got really dizzy (vertigo). His doctor said to stop the drug for a week then start back with only 1 dose per day. He is really nervous about going back on. He had great results but couldnt deal with the dizziness. DOES THE DIZZINESS GO AWAY??? HELP!
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The lightheadedness does go away, but I had to discontinue the Ampyra altogether because it caused me to have a relapse.
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I started Ampyra about 3 weeks ago. The first two days I had a lot of dizziness and nausea. I continued and by the third day those symptoms went away and I felt more stable when standing and that my walking improved. Unfortunately, my good results didn't last and about a week ago felt that my MS symptoms actually got worse. My legs feel very heavy and my limp is more pronounced. My neuro. said to go off for a week or two and then begin again with 1x a day and work up to 2x per day. If I feel better tomorrow off of Ampyra, I may not restart. Although I had great results for a week, the dizziness, nausea, and worsening of symptoms may not be worth it.
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I really appreciate your professional approach. These are pieces of very useful information that will be of great use for me in future.
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I am 10 days into taking Ampyra. First 5 days i felt it may be improving my walking but the side effects of dizziness and leg burning took away from any improvement. After 5 days went to one pill a day with hope of reducing side effects while seeing walking improvement. Burning continued with no improvement in walking. The side effects frighten me and i am getting numbness and burning in areas that were never effected by my MS. I am going to halt taking it tomorrow and see if i can get back to my normal MS condition. My Neurologist had high hopes based on where i am with my disease, but he did say it doesn't work for every one. I just hope the feelings i am experiencing are not the start of an MS exacerbation which i haven't had for 4 years. Then i will not only be disappointed with Ampyra, bur extremely upset.
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Marc, I started the Ampyra on Fri. 9/3.
A few days before the shipment arrived a patch of skin on my right thigh never affected, went completely (novacane) numb . Then the burning sensation was unbearable. I told my family that if that had happened a few days later, I would have blamed the med and quit it. I've had some side effects, but they're tolerable. The walking isn't effortless but a little bit easier and I'm only 10 days into the drug. I can only hope it gets better.
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I had the same experience. When I first started Ampyra I felt great. Other people even commented on how much more stable I seemed and my limp was actually gone! I had all the side effects but I dealt with them b/c I felt almost normal again. Then during the third week, the positive benefits were gone but the side effects remained and I did have a mini relapse. I went off of it for about 2 weeks and then my neuro said to try one a day for two weeks and then try two. I'm currently on one a day. No side effects but no improvement in walking either. I will start with 2 pills tomorrow. I'm a little nervous but hopeful that I will see improvement again.
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I'm very similar to you. I went down to 1 pill a day for 6 days and still have some nasty side effects so as of tonight i'm stopping it completely. I have seen no improvement in my walking so far. I may start again once the side effects subside. Keep me posted.
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Interesting blog. Actually google made searching of information easy on any topic. Well keep it up and post more interesting blogs.
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hi my name is greg ,i haven,t started it yet i have to see my doctor first and i hope this will be for me , i looking forward to it in jan,of 2011
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Jim wrote:
.I started Ampyra a few months ago. Then I started getting these real wierd dejavu funky epposodes. Combined with bad naucia and hot flashes. Lasts about 15 minutes and goes away. Not fun. Rather not take…no noticable improvement. Was told that these may be mini seisures. Be careful !!
.
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Gary, can you please bring me in contact with Frank?
ms2002live@gmail.com
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Hi, I would but I cant give out contact information without permission. I posted your comment so he will be able to see it and contact you. If you need more help let me know and I will contact him on your behalf. I hope this is helpful.
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I was wondering if anyone had an experience like this and what the next step would be. I have been taking ampyra probably for about a year. Had few side effects, but they went away. After several months, started to have severe insomnia issues. Phar. said to go to one pill a day. I had never been sure I was getting any benefits anyway and nothing seemed to change on switching to one pill. Not liking to take medicines at all, especially if not working, I decided to experiment and stop while I still have plenty left and can go back if needed. I do feel like there is a major diffetence now, but we have just come into a spate of hot weather and I have been outside alot. I have had MS for many years and have taken no drugs for it ever until now. Question-does one pill work? Should I blame the new weakness on the heat or lack of pills? I am noticably worse than before in hot weather. Is this where I would be if not having taken the ampyra? If anyone has any feelings on this that would be great.
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Hi Carol (and everyone). I think we may feel similarly about medication-- I am not a big fan of the allopathic, and other than LDN, which I started taking 1/1/11, I have only taken homeopathy and done regular acupuncture since diagnosed in 1996 until now. Today is the 4th day that I have taken one Ampyra. so far, so good-- I actually think it is helping my gait and my right hand (2 big problem areas these days), though my expectations are low b/c I have been reading these and other blog posts about Ampyra (LOL!) but it is HOT out these days- and remarkably I feel good (thank G-d!) and not negatively effected by the heat or humidity.
my question is should I just stay on one dose and hope it gets me through the hot summer, or should I go to 2, with the fear of side effects? Ampyra is "extended release"-- does this mean it is effective for 12 hours, and therefore it is recommended to take a second dose? or, does it need to build up in my body? cause if it is the former, I have no need to walk steadier after 7 pm (though it would be good to type more fluently), and would just as soon stick w/ one... anyone know the answer to this question? thanks-- and best of luck to everyone! (p.s. sorry that this does not directly answer the above question, though I do think the heat will play havoc on M.S.)
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I have been taking Ampyra since Nov, 2010. Am 62 and was diagnosed in 1991. Ampyra did what my doctor said it would do ...help me walk faster, not better. However, just this weekend, when I thought about it, Ampyra is doing nothing. Can't walk faster anymore,yuk balance and seems to be maybe a little worse. So, today I am going to stop for awhile. I swim half an hour a day, alternate with weights and machines. Drink a glass of red wine or a scotch every day. Heat bothers me, too, especially as I get older. I live in NYC and take a cane everywhere. Maybe this is just the way it is for me and my particular PPMS. Good luck.
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I´M FROM MEXICO, A NEED SOME HEL TO GET EMPYRA IN MI COUNTRY, SOME ONE OF THE US CAN HELP ME, I MAY FINANCE SOME FOR HIM redcamel.80@hotmail.es
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Has anyone who has had paralysis on one side tried Ampyra? I have had a foot drop since I was first diagnosed 4 years ago. My neuro started me on Ampyra in December. I took it for about a month. I didn't see a huge improvement and it caused me lots of insomnia. However, 2 weeks ago, I had another flare and my right leg is completely paralyzed. I have been on IV solumedrol and oral prednisone without any improvement at all. I can only take a few steps with lots of support. I have to use a wheel chair for all of my activities outside the house and many in the house. I have some Ampyra left from December and I am thinking about going back on it. If it can get me out of a wheel chair, then I will figure out what to do with the insomnia. Has anyone had an experience similar to mine and had Ampyra work for them?
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I have just developed headaches. When they first started acetiminophen would erase them. Now, not so much and seems like I get more of them. Does anyone know if these go away? Am thinking of getting off Ampyra. I did have insomnia and that went away.
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I started Amypra May 2009. I got great results for about 2 months and was very excited. Then it became only a slight improvement, but in the past 8+/- months I notice my balance keeps getting worse. I plan on going off Ampyra to see the difference but with this lousy hot, humid weather we are having this summer, it would not be a good test. I will test that theory in a few weeks when the weather cools.
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This information is very helpful. Thanks for sharing your experiences with Ampyra and 4-AP.
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