New MS drug Ampyra | Questionable effectiveness, high cost

Thursday, May 27th, 2010 By

Crutches

Ampyra proports to be able to help patients with MS improve their mobility. Image from Flickr.

The first and only oral drug intended to improve walking in multiple sclerosis patients, Ampyra, was approved by the FDA in January. Acorda Therapeutics, the maker of the drug, has presented numerous studies about the effectiveness of Ampyra. After several months in general release, Ampyra has seen slow but steady sales but faced questions about effectiveness and side effects.

What Ampyra is used for

Ampyra is a sustained-release Fampridine SR pill. Ampyra is intended to block some potassium in the body and restore nerve impulses. Though Ampyra has been studied for spinal cord injuries, it has been approved to help patients with Multiple Sclerosis walk more easily and more quickly. The annual cost of Ampyra is about $10,000 to $15,000 a year. At a cost that may require no faxing payday loans to pay for the drug, what are the risks and benefits of Ampyra?

The uses of Ampyra

Ampyra is a drug that has shown to help improve walking speed in MS patients. About 35 percent of patients taking Ampyra improve their walking speed. The original studies used by Acorda Theraputics to get the drug approved relied on twice-a-day doses. Ampyra as it is sold in the United States market is a once-a-day sustained release tablet. Ampyra is intended to be used as an “additional” treatment, in conjunction with other MS drugs.

The numerical effectiveness of Ampyra

While studies have shown that Ampyra is effective, the percentages in the study appear to be only barely statistically significant. The group of patients in the double-blind study taking the drug in Ampyra did improve their walking speed. Patients were able to walk 25 feet between half and .88 seconds more quickly. While this is a statistically significant improvement, it is only barely so. For MS patients that may be declining, though, that improvement could be very helpful.

The side effects of Ampyra

Ampyra is sold with significant side effect warnings. Almost 15 percent of patients experienced urinary tract infections, and insomnia and dizziness are also very common side effects. Patients taking Ampyra also reported relapses in symptoms almost twice as often as patients taking a placebo. Fampridine was originally developed as a bird poison, and it has also been shown to cause severe seizures if one takes twice the recommended dose.

Sales of Ampyra

In the first quarter that Ampyra was FDA-approved for sales in the United States, Acordia reported $3.4 million in sales. The drug was first shipped to pharmacies on March 1, 2010. About 2,000 prescriptions were written for Ampyra by April 29. The drug is expected to continue increasing sales. The real question, though, is whether the dangers, health care costs and side effects of Ampyra are worth the 35 percent chance of walking 25 feet one second faster.

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This post has 126 comments

  1. hannahd915 says:

    ampyra hasnt helped my walking at all in fact my wants me
    to stop using it due to monthly co payment of $45…

  2. Jhon says:

    If you are in copaxone? can you take Ampyra at the same time? not sure……..

  3. CAROLE says:

    I HAVE HAD MS SINCE 2006–STARTED WITH NUMBNESS. DIAGNOSED ONLY 1 MONTH AGO. FINALLY FOUND A WONDERFUL NEUROLOGIST WHO WITHIN A COUPLE WEEKS KNEW WHAT WAS WRONG WITH ME. ANYWAY, I'VE BEEN USING A CANE FOR ABOUT 6 MONTHS, WALKING PROBLEMS FOR ABOUT 2 YEARS, DIDN'T BREAK DOWN AND USE THE CANE UNTIL I FELL AND GOT HURT. STARTED AMPYRA 10 MG EVERY 12 HOURS LAST WEEK, I CAN ALREADY TELL IMPROVEMENT. STILL USE CANE, OF COURSE, IF THIS CONTINUES TO WORK IT WILL BE WONDERFUL. I SET ALARM ON MY CELL PHONE FOR EVERY 12 HOURS – SO I WON'T MISS A DOSE. IF U DO MISS A DOSE IT SHOULD BE TAKEN WITHIN 1 HOUR OR SKIP IT ALL TOGETHER UNTIL TIME FOR NEXT DOSE. TAKING DOSES TO CLOSE TOGETHER MAY CAUSE SEIZURES. I WAS A LITTLE SCARED OF IT BUT I ASKED MEDCO/ACCREDO PHARMACIST 1-800-803-2523 QUESTIONS, HE MADE ME FEEL ALOT BETTER. (YOUR LOCAL PHARMACIST WILL KNOW VERY LITTLE IF ANYTHING AT ALL ABOUT THESE MS DRUGS) THEY ARE **SPECIALITY DRUGS**. MEDCO/ACCREDO PEOPLE ARE WONDERFUL AND VERY, VERY KNOWLEDGEABLE. I START COPAXONE SHOTS NEXT WEEK. SHARED SOLUTIONS 1-800-887-8100 HELP WITH PRICE FOR COPAXONE SHOTS. NEUROLOGIST SET ME UP WITH BOTH OF THESE GROUPS OF PEOPLE.

  4. ken crawley says:

    I took it for 10 days and thought I was going to have a heart attack, and also had some strange mental things going on. I stopped

  5. ken crawley says:

    I start Thursday

  6. sasan taghian says:

    How many time must use ampyra?

  7. Harriet says:

    Have PPMS, take LDN only, and now just began Ampyra. Was told I should begin with one a day for first week and then take two. I certainly do not want to suppress immune system. Does Ampyra have this effect?
    Would appreciate comments. By the way, I walk with cane or walker for longer distances, and hope Ampyra will help.

    • Yiskah says:

      Hi Harriet, I have had MS since 1996, and am not taking Ampyra (yet), but this past week I went to a seminar on Ampyra given by a Dr. from Columbia U. He said Ampyra is a potassium inhibiter and not an immuno-suppressant. Good Luck w/ whatever you decide to do!

  8. m.s. says:

    Gave up Ampyra? Invested in this and have some product left on the shelf? Then you migth be interested in a refund: e-mail ms2002live@gmail.com for information.

  9. Dawn says:

    Ampyra has a patient assistance program.

  10. jenna says:

    Please see the link for http://www.mult-sclerosis.org/4aminopyridine.html. You don’t have to look for Ampyra, just ask your doctor to prescribe you the 4-minopyridine; cheaper and original formula. Some say it works and can be taken with LDN.

  11. alesia says:

    Ampyra is a true blessing for me. My only trouble is where I get it shipped from is snowed in. So, I am waiting to get my refill. I hope it will come Tuesday! I walk better, more energy, and feel better.

  12. Elaine50 says:

    I am glad to hear that many people are having the same reactions to Ampyra that I am. I was diagnosed in 89 and was told that I would not be walking within a year – well that was a DR that did not have MS, so he really did not know what he was talking about. I have done all the drugs, Avonex, Rebiff, Novantrone, Solumedrol, Tysabri and now Ampyra. I have been taking it for 3 months. For me the results are fantasatic. I could not lift my left leg before so I sort of shuffled along. I can now lift my leg and actually walk with a fairly normal gait. I know it sounds crazy but I feel like I am taller. If anyone is thinking about trying it, go for it!

  13. Mary Ellen Enoki says:

    Prescription Solutions told me that ampyra would cost me $362.10 per month. I have AARP part D prescription coverage thru United Healthcare. What gives with these excessive costs? M. E. Florida

  14. Vi Riek says:

    I have been taking Ampyra for a week and continued even when I had a stomach virus not related (other family members also had the virus) and I haven't experienced any more negative side effects than with any medication with same warnings. I am secondary progressive and have had MS since 1985. There were very few options at that time except steroids which I didn't take because of other issues. I later took avonex and then copaxone in an attempt to maintain level of ambulatory ability. This is the first medication I have been offered that had proven effective for secondary progressive MS, everything else was RR MS and had no good response for me.. I am praying that this med will help me to walk better with or without a cane . I am 65 years old and excited about the possibilities for the first time in many years. My MS was actually traced back to 1975 so I feel very blessed to be ambulatory after all these years.

  15. Sandra Hammer says:

    How are you all getting the help to pay for the ampyra–we haven't found any help–paid 999$ for first month???

  16. anita says:

    I just started Ampyra and two weeks later, got sick…..because I took the 2 pills twice in one day. I feel a difference in the way I am walking. So far, I think the drug is going to do the job. That was my fault with taking 4 pills of the Ampyra, I was only to take 2 pills once a day, I had forgot. I literally thought I was going to die. But thanks to God, I didn't. My mom is now helping me with all my medicine. Ampyra is beginning to work, I can feel it in the way I am starting to walk. I will keep you informed with the success of ampyra and my walking. Ampyra is an extended release drug, meaning over the time period of that day, it will release the medicine in your body to improve your walking in the time period until the next dose is scheduled to be taken. Taking 4 pills of Ampyra was just about an overdose. So just in case you have a problem with memory, get a pill box with the day and slots of when to take your medicine. With that, I feel I will see a differende in my walking.

  17. Annie says:

    I have been taking Ampyra since August, 2010 with a one-week break due to minor side effects. My posture and steadiness while walking have improved to the point where mild acquaintenances have commented on it. However, over the last few weeks I have been noticing that my teeth ache. It's not one tooth like a toothache but all my teeth. I don't know if I should attribute this to the Ampyra or not. Has anyone else experienced tooth pain?

  18. Proverbs says:

    Ampyra was beneficial for me after I mhad been onn it for two months. Cost forced me to stop. I have restarted the precscription [last Thurs]. Althoughh the iinitial response was postive; a noticeable improvement. I have not seen any change this time; it will ytake time to build back up in my system. The comments I have read are so familiar to my experiences. It's been 20+ years with this disease and am just understanding the warning of progressive – the nital disabilities will worsen. And once the downhill slide begins, it picks up speed. Ampyra seems to provide some indication of relief.

  19. miss polly says:

    Ampyra has been a miracle drug for me. I'm a secondary progressive of 17 years. within days, Ampyra returned the nerve funtion in my left hand (and the ability to SWEAT) after ten years, but the largest gift was in cogitating and speaking at the same time. I feel 25.

  20. ABB says:

    I just wanted to clear something up that the article and a lot of media didn't make clear: Ampyra is NOT a disease-modifying drug, meaning it is not meant to have any effect on the course of your disease–it does NOT prevent or control relapses or lesions. It only treats the "symptom" of ataxia or difficulty walking by helping improve strength and mobility. So do not expect to not have any relapses on this drug, that is not its purpose. It is just to help with walking.

    • Mary says:

      In fact, didn't the studies about this drug find a higher frequency of relapses in people on the drug than on the placebo?
      It sounds like it's a trade-off. For some people, it improves walking a little or even a lot, and for everybody it increases the risk of a relapse and creates a risk of seizures. It's an expensive gamble if you don't have insurance and you don't qualify for the manufacturer's financial assistance!
      I've been taking it for a couple months, and I think my walking's gotten better, but not dramatically. I'm now wondering whether the risks and expense are worth it. Maybe I should take a drug holiday and remind myself what I felt like before I started.

  21. Sandy says:

    I've been diagnosed for 30 yrs, and have been very productive until now. I'll be trying ampyra and hope for the best.

  22. Peggy says:

    I've had MS since 1984 and started Ampyra on September 1, 2010. Usually, I use an electric wheelchair. I'm afraid to try walking for fear of falling. In the past, I had excellent results with steroids. They actually helped me walk. Maybe someday Ampyra will do the same.

  23. Margot says:

    Hi,

    I have had RRMS for 20 years. as my leg dragging got worse I decided to try Ampyra, have been taking it for about 9 days. I actually feel awful, spaced out, very dizzy, walking worse, headaches. Did anyone have these symptoms at first and then their body got used to it and things became better, I just feel like I should stop taking it, my neurologist says I must persevere, just wanted to know if anyone else felt like me in the beginning.

    Thanks
    Margot.

    • Sandy says:

      Yes, I have had same problems as you , including much more burning to my legs! I have actually stopped taking it because of this……….but ended up back on the couch with no energy. Tried it again only decided to just take one pill; I can not tolerate two pills a day. One does help, but is still causing ms problems; I will try to wait out bad side effects for a week or two. After that I think I will make a decision. If the pain and symptoms continue, I will stop. Last time I was on two pills/day, I stayed on it for 8 weeks and the symptoms never stopped. Don;t know if it's worth what I'm experiencing………even migraine headaches. Good Luch. Sandy

  24. Shelly says:

    Okay, here is my two cents worth–oh by the way I am a journalist.. True, but that is just a kicker since there has been a few negative comments about journalists. I am 62 and if you are over 60 you may know most doctors put you out to pasture. Very few blind study tests are available for the us.

    I started on Ampyra over a month ago. Since then I have been in the hospital for over a week because my immune system was compromised and I had a asthma-bronchial infection. I called the pharmacist and they did not think the drug had anything to do with it. I took their word and continued on.

    There are days when I do feel like my gait has improved, but only for a short distance. I am a powerchair victim, or shall I say a victim of powerchairs. Let's be honest, the chairs are a lifesaver but we all to often forget to exercise–and I am an advocate of such.

    But, now, the more I push myself the weaker my whole body becomes. I have been on disability since 2002 so work is not the issue, though I freelance from my home. If possible I shall stay on the medicine but I feel though my body is on a razors edge from a MS relapse. The worse thing any MS'er can do is give up every time we feel we can't do something.

    When that point comes when all hope in the drug is lost, then I shall say it didn't work for my, um, a little past middle-aged body.

    One suggestion and this is important for our short term memory friends, get a pill dispenser. Several times I forgot whether or not I took the darn pill, so now at the end of the month there are too many pills left over. Most of my meds come in a docu-dose so this bottle just sits and stares at me saying eat me.

    I know a lot of people that could not tolerate the Ampyra and I know some who like it. Don't feel bad if it does not work for you. I have been through the whole gamut and most drugs have not worked for me. My prayers are for the younger people who have a whole life before them. We need a cure more than a pill. I am not sure if those who are totally wheelchair bound and living in a nursing home will see results but that is between you and your Neurologist.

    In conclusion, I am from Scandinavian decent and lived up North for half my life and now live in a section of the lower Midwest where MS is very prevalent, so I know MS. I am an ambassador for the MS Society and very involved in a local support group. I push folks into finding support and being around those who can share positive energy.

    Don't let articles discourage you no matter who writes them. The journalist was only doing their job and that was penning the facts in black and white. You are the one who feeds information to the doctor and they in turn to the drug company. Hang in there and good luck.

  25. Christine EL-Hashem says:

    I was diagonised with M.S. 1n 1997. Presently I am on Capoxone. I was thrilled to hear about Ampyra. Since April I have been checking with my neurologist and pharmacies in my area about it none of them has it ,and my neurologist did not see any representative from your company yet.I live in the Tampa Bay area in Florida.
    Would you please tell me what is going on? Is it available in my area yet? if not why? when it will be. I appreciate your help ,because I barely can walk 20 feet with the help of the cane.
    Sincesely yours; Christine

    • Amy says:

      I have been on Ampyra for 2+ months. I was diagnosed with MS in 1997 – I am now left with decreased sensation, tingling and pain in my upper extremities, chest and upper back. I have been on Copaxone ever since. I had my first MS “attack” back then and have had no other exacerbations until recently, when my neurologist started me on the Ampyra for burning pain in my feet. The Ampyra takes the burning pain away. I know because I have actually stopped it for several days to see if the pain came back, and it did. The side effect I have noticed is that it makes sensation in my upper extremities worse. I trade off, pain for less dexterity in my hands. I am a medical transcriptionist by trade, for 16 years. This makes it extremely difficult to type, (not to mention darn voice recognition)! I am still on the Copaxone and Ampyra together. I guess I’ll wait and see what happens.

  26. Caroline Cisternino Hart says:

    I have now been on Ampyra for 1 1/2 months and I have gone through 2 Exacerbations
    since I started. My legs have collapsed twice. I have decided to continue Ampyra b/c it helps
    me dramatically with my Exhaustion! With 2 grade school children, that is huge! I am thinking 1 out of 2 is worth it!
    Now I have to evaluate what I miss when I am laid up and can't go anywhere!

  27. Pookie says:

    My fiancee had been on 4AP from a compounding pharmacy for about 6 months – he was not on the maximum dosage and was doing pretty well. More endurance I would say. Then he started on the Ampyra from the VA. 10 mg twice a day. Since then he has been falling at least once a day. I have been hearing that it could cause muscle weakness and relapses. Has anyone else had this problem?

  28. Bob says:

    I have been taking Ampyra for about 7 weeks.I use this in addition to daily Copaxone shots. I noticed a difference in my walking after about 10 days. I recently went back to where I had worked (Home Depot) to visit my associates and most commented on the improvement in my walking also.
    I am fortunate that I have not experienced any adverse side effects to either the Ampyra or the Copaxone. I am very grateful to still be able to walk; even slowly.

  29. Scott W says:

    My name is Scott I was diagnosed with MS 7 months ago. It effects me from the waist down. Trouble walking, stiffness, dragging feet, weakness, fatigue, numbness. I do manual labor work. Lots of walking and after an hour I cant feel the bottom of my feet. Oh and going to the bathroom is a real treat. My doctor put me on Avanex and Im constantly trying to observe myself for any symptoms that may be getting worse. The bathroom part is newest to me. My doc has ordered Ampyra for me and I am VERY EXCITED!!! I am learning how to deal with MS and most of your comments are very inspiring. I want to talk to more people w MS because I was beginning to feel alone, even though I realize I am one of the lucky ones that was diagnosed in the age of modern meds. Wish me luck! :)

    • Tony Connolly says:

      Scott,
      My name is Tony and I was diagnosed right around the same time as you and have almost the EXACT same symptoms. I opted for Tysabri intead of the avonex and and can say that it has certainly helped. For the first 100 steps I am walking great (you would not know I had MS) but then the tightness starts to set in and then what i call the Python effect. My doctor asked if I wanted to try Ampyra and I said anything that might help I will certainly give a try. He said it takes about a month for all the insurance paperwork to go through but I am also excited. I dont have a login but if you would like to compare or just need someone in a similar situation feel free to email me at tconno1@comcast.net. Good Luck

  30. jim gordon says:

    i have had m.s for 12 years and have tried almost every drug both easten and western . the best drug i have used is LDN . m.s doctors cannot prescribe this drug because it is not FDA approved for m.s . this drug has been around for years so there is no money to be made on it , thus no testing . but check it out . low dose naltroxone , there is plenty of info on the web . read up on it and bring the info into your primary doctor . it is available at a compound pharmacy only. this is the drug that has helped me the most with no side bad side effects

    • Max says:

      Yes you've got it. LDN is the only thing that's really helped me so far. (had Ms for the last 8 years). Max

    • Yiskah says:

      Hi Jim, I have lived w/ MS since 1996. LDN is the first allopathic medicine I have been on. I also do homeopathy, and prior to this, had regular acupuncture for years. I have been taking LDN since 1/1/11 (right after I weaned my baby). I do not know if I can see any results from this. Please let me/us know what good LDN is doing for you… I am currently not taking Ampyra, but I am open to it. However, I am a bit discouraged because I have read that as good as it seems to be in the beginning, by 3 months (or so) the positive effects seem to wear off. Hopefully this is not the case for most of you! Best of luck!

  31. Shondee says:

    my cobra ins will run out soon. does medicare pay for this drug?

    • Dawn says:

      No. But you can contact the makers of Ampyra, they have a wonderful patient assistance program!

    • Lera says:

      I was laid off and with my disability unable to gain other employment. I now have Medicare and they will cover the Ampyra medicine but it must go through a determination of some kind and be approved. The manufacturer calls it a TAR. This requires an application from your doctor which includes clinical notes and a timed walking test. Based on your TAR and income, your copay with the pharmacy – Bioscript, will most likely be waived. The issue that I had was an out of pocket monthly cost with Medicare before they would cover it – $944 a month. So Bioscript sent me back to the Ampyra folks who had a program available to cover all of my out of pocket costs for one year, also based on my income. I filled out another application and sent over the first page of my tax return and I was approved within 2 days and sent the medication 4 business days later via FedEx. All in all, the whole process took 2 months. I have been on Ampyra for 3 days and with faith and a promise, God will see me through this obstacle. I hope the same for you.
      I hope this info helps, so dont be discouraged.

  32. mel says:

    has anyone benefitted from ampyra for cognitive issues

  33. Megan says:

    Mary, thanks for writing this. I'm 26, have MS (my c-spine is pretty much covered), and I'm having difficulty walking…so my neuro put me on this. I think people should try it, but the realities of the drug should never be hidden from them because they may just be too fragile to decide for themselves if it is worth the risk. Thank you for taking MS patients seriously enough to give us the benefit of the doubt that we may be able to think for ourselves. :)

    • Kathy says:

      Mary, did the Ampyra help? My c-spine is pretty much covered as well & I have been on Ampyra for 6 weeks with no change…

  34. Lisa says:

    My mother was diagnosed in 1995 and has really gotten bad.She has been wheelchair bound for close to 10 years and has been in a nursing home for the past year.She has problems swallowing pills and has spoke to the doctor about trying this but I had a couple questions for anyone who has ms and been on this pill. The doctor has zero knowledge about this medication and wants me to find out what the size of the pill is so he can decide if she would even be able to take the pill.She usually has her pills crushed but I was told that is not possible with this pill.Can anyone tell me if this is true and what the size of the pill is? Also I really dont expect this pill to be a miracle and have her walking the next day but I was wondering if anyone else who was wheelchair bound had any benefits from taking this pill.I am hoping maybe to get her at least some strength back in her hands which she has recently lost.Thank you all for any help with this and God Bless! I pray for a cure soon.

    • AnnaMarie says:

      The Pills are large and they can NOT be crushed. I would ask the doctor if she could try taking the compounded 4-AP. Same med just not time released. Wish you well, and hope this helps your Mother. I went from having to lift my leg with my hand into the car, to just lifting it on my own. I used a wheel chair most of the time, and a walker at home. Now can get around my house unaided.

    • Maureen Wills says:

      Lisa,

      I feel for your mother. I was diagnosed RRMS in 1994, have been on Copaxone since 2000, and have been stable for years. BUT, I really have trouble with pills. I always chew them. With Ampyra, you can't chew them.

    • colleen says:

      Time to get a new doctor! it is his/her responsibility to find out what size pill it is. It's shameful that a doctor who is obviously making much more money than you is not familiar with the drug, its sized or its effective. God bless and hopefully you can find a more dedicated physician who knows what's going on!

      good luck!

    • Sue says:

      Do not crush pills, cut pills or dissolve in water ampyra is extended release. Do this will greatly increase your risk for seizures!

  35. Terry54 says:

    Wait… They’re marketing a drug that can cause seizures if you take twice the recommended dose, in a once a day tablet, to a group of people with known memory issues.

    Genius.

    • Gary says:

      intelligent statement. Keep your negative thoughts to yourself

    • Rosemary says:

      started Ampyra for my SPMS a week ago. I am very excited about the improvement I am having. I no longer drag my leg and I can actually pick up my leg when using the steps. Before it was swing the leg around and try to catch the step. I also have improved energy so my attitude is very positive for continued improvements. I know I will never have a normal gait but this is a big step in staying out of a wheelchair. I highly recommend giving it a try. I am 64 and was diagnosed 25 years ago. I went into secondary progressive MS about 4 years ago and the walking became increasingly difficult. This treatment gives me hope and has already improved my quality of life. Go for it, we have to keep trying and never give up!

    • Julie says:

      It's a twice a day tablet, not a once a day, and my neuro said that she's never had a patient have the seizures. Take it once in the morning, and just before bed. Not exactly rocket science.

  36. Bonnie klan says:

    I have tried Amprya twice with bad side effects. Extreme balance problems. Anyone else have this? It was suggested I start with 1 pill a day until my body gets used to the change-but I don't know if it is worth it.

    • Linda says:

      Use caution and prayer in making your decision. God bless!

    • frieda says:

      I was diagnosed with ms 23 years ago.Never thought much about it because I did no experience many symptoms through the years.After about 8 years I got opticneuritis,went away in a month. Then it took about 10 more years for a slight drop foot to appear.Now I can barely walk to the bathroom.I have my name on a waiting list for CCSVI in Poland, I have changed Doctors because it seemed as if the frist neurologist just wanted me on Copaxone and nothing else.__I do not know what to do, as I did ask this second doc to find something for me to sustain a better quality of life.Ampyra is what he suggested.I've read the pros and cons.Wanting to have a normal life without foot drop and pain seems to be on the horizon, but is this drug worth insomnia, seizures, and relapse?. What does the FDA really care about.?If I travel to Poland in January, will that surgery "cure" me? I've never been faced with so many important decisions.

    • Julie says:

      I had the same experience, and changes to taking one tablet at night, before bed, for about 1 month. Then, when I had a "slower" and less demanding few days ahead of me, I started taking it twice a day, and it's been really really helpful. Hang in there, and give it a week or two if you can. I'm like many of the other responders; the author of this article does NOT speak to my experience at all. I'm very grateful for my results, and ALL progress being made in MS research. Good luck!

  37. Amy R says:

    I was diagnosed with MS in 1995. I started out relapse/remitting but have now been diagnosed as Primary Progressive. I started out on Rebif, then to the SoluMedrol for pain. I was the classic foot-dropper and dragger for a good 1+ year which caused pain in my back and knee which in turn made everything worse. It became very painful. I started using a cane so that I didn't fall.

    So now I am on Ampyra (three weeks) and I am walking much better – although maybe not much faster. I am getting a better response from my foot and therefore not wrenching my back. The pain is pretty much gone and now I am working on regaining the strength in my leg and back. I may even loose the cane soon.

    I am finding there are other benefits from taking Ampyra in addition to faster walking speeds.

    Amy

    • Susanne says:

      What other benefits are you seeing?

    • Rick says:

      Hi Amy what are the other benefits? I Was diagnonsed in 1996 , have progressive ms , also foot drop and drag , and balance problems , lots of spasms so painfull . Also resless leg . Please keep in touch I will
      be starting Ampyra in a week after some tests , Let me know what side effects you notice Thanks Rick
      rick710@verizon.net

  38. Susan says:

    No wonder our health insurance premiums are so high! My daughter has been taking the compounded 4-AP for two years. She's a spinal cord injury patient and has seen good results from the drug. Because it was experimental, insurance wouldn't pay for it. We have been paying roughly $50 out-of-pocket for it to be compounded. So why is it costing so much now that it is being manufactured commercially? That's insane!!!

  39. Candace Millsop says:

    @Mary – Journalist or not…how can you possibly write anything about MS if you don't actually have it? Even though you put 100 people with MS in a room, no one will have the exact same symptoms. I agree with other comments and every little improvement is a milestone and greatly appreciated. I was diagnosed in '95 and went on disability in '02. I had a horrible reaction to Avonex and then a mild reaction to Copaxone. I have RRMS which is probably secondary as I am in a chair 24/7. My Dr. wants me to try Ampyra but have some reservations but I won't know if I don't try. But if I were you…try writing about things that you have experienced or have direct knowledge about otherwise…why should we (MSers) even listen to you??

    • Mary Rice says:

      Candace-
      The way research and writing works, not everyone can always have direct experience with what they are writing about. I attempted to show the truth of the research – that the drug can be helpful, but not to the extent which the drug's marketers claim. I am incredibly happy that Ampyra has helped MS patients, and I truly keep my fingers crossed that a cure is eventually found.

    • Alan says:

      If you want to interact with thousands of MS'ers, please visit http://www.msworld.org.
      Everyone there has been impacted by MS. The major focus is Information and Support for people living with MS.
      And, all of the staff who operate the website have been diagnosed with MS.

      Hope to see you there!

      Alan

  40. Laurie says:

    I'm finally going to start taking Ampyra tomorrow! I'm very excited and hope for the best. I asked for the script not expecting miracles, just some help. 35% of MS patients see an improvement, thats huge! Do you know how many people have MS in the US?? Those statistics are huge to me. As with any med, everything works differently for me than they may for others. Having an understanding of that, I still chose to try it. If it does great things for me, then thats awesome, if not, I move on to something else. Its certainly worth the try. We have nothing to lose at all.

  41. Kathy says:

    Tadd,

    I hope you are still reading this site. I am from Covina also. Ampyra has been great for me. I walk better. My posture is better. I feel inches taller. I have more energy and smile again. Everyone who has spent anytime with me has noticed the difference. The only thing I have noticed is that when I didn't take it fot two days and I was worse then before Ampyra, I hope you check into it and if you try it that it works for you. I would like to know if you do try it and how you do. If you need a local ear (eyes for reading I guess) feel free to email me, munroserv@aol.com.

    Good Luck with it.

    Kathy

    Covina

    • Elayne Brown says:

      I am going to start tommorrow I am scaried all the side effects. I hope it works like you say.And it costs so much money.

  42. Ann Niemann says:

    Baclofen and Ampyra success story:

    I was diagnosed with MS (PP-SP) in 2006. My goals: Trying to meet the challenges of MS 'one day at a time',and to aggressively address personal 'MS Damage Control'. Recent MS history:

    Dec 2009 I had a successful surgery for an ITB (Baclofen) pump. My spasticity is 80% controlled. My mobility is 60% improved. I am able to walk with a cane. My posture is more upright with muscle tone/spasticity better controlled. OMG I am not contorted, with involuntary spastic movemens.

    May 2010 I started Ampyra 10mg every 12 hrs. Now, 4 weeks later, my muscle strength is 50% stronger, and MS fatigue-ability is noticeably less.

    These are SIGNIFICANT improvements in the quality of my life. This renews my vitality! I am inspired and have the energy to do my stretching exercises. I am learning to pace my energies, as overdoing is everpresent! (RLS, spasticity triggered) I never imagined I would have to meter my energies! What an awesome problem that is! Fears are replaced by courageous bravery for the MS journey.

    PS Unless you have our MS disease, you cannot possibly understand. Please do not write about that which you do not know.

    • Alan says:

      Ann – Your post is amazing and to the point. All of us with MS understand.

      You are welcome to visit MSWorld.org and post your experience. There are tens of thousands of people living with MS who are members of MSWorld. You can also search the Message Boards for any topic of interest.

      The MSWorld Facebook Fan Page is at: http://www.facebook.com/MSWorld.Fan.Page

      Looking forward to more of your comments!

      Alan

    • denise says:

      PS Unless you have our MS disease, you cannot possibly understand. Please do not write about that which you do not know.

      your ps statement is great – and so true – my family at times will say 'just walk" wish i could

  43. Teresa says:

    I've taken the Ampyra for about 10 days; no real improvement yet and some side effects – insomnia and terrible itching of my palms! But, I'll keep with it for some months at least. Why not? I wish the best to all of you.

  44. karen says:

    I've been on Ampyra for 6 weeks. It is AMAZING! my walking speed, distance, stamina, strength have all increase dramatically. Who wrote this article??? The cost is $40.00 pr month and it has given me my life back!!!!

    • Mary Rice says:

      Karen-
      I am very glad that Ampyra has helped you. I wrote the article, and the cost of the drug cited in the article is based on the uninsured cost of the drug.
      Thanks!
      Mary

      • karen says:

        Mary, the company, Acorda has pledged that no one will pay more than $40.00 copay. In fact, if someone lacks insurance, they most likely will pay nothing for the drug. I am not sure if you have MS, have tried it, etc, but please be careful with scaring away folks whose life may possibly be transformed. Yes, it doesn't work for everyone, but boy, for those of us for whom it does work, its amazing. the cost is a little over a dollar a day. I am on several blogs about ampyra and the overwhelming verdict is that it is amazing and affordable for the majority of we who suffer mobility problems with MS. I am curious your motivation for the article?

      • Jhon says:

        Hello, i was diagnosed in january of this year, i have the prescription for this medication but dont know how to get it and obiously getting the financial help, your help will be apreciate………

      • Rachel says:

        Mary, I agree with Karen. I have MS and have just started Ampyra. I am on Medicare and I didn't qualify for the $40 a month plan, I qualified to receive it for free!

        To say that MSer's can walk one second faster so what's the point, get MS and then tell us that! Otherwise, that comment was a slap in the face!

      • Mary Rice says:

        Rachel-
        I was trying to point out that while there was an improvement in walking speed in some of the clinical trials, the walking speed of patients actually regressed in others. As I have said before, I sincerely hope that the drug helps patients… I just wanted to point out that the studies used to market the drug have two sides.

      • Chrissy says:

        Mary,

        I work in pharmaceutical research and also have SP MS. I have read over the clinical analysis and see exactly what you are talking about. It is a a simple thing to say talk to you doctor and then everything is decided. This is the usual La-La land statement that I have come across. I finally got a prescription for Ampyra and started taking it a week ago. Acorda was extremely helpful in setting up the price. I only ended up paying $25 a month. Weighing the cost, side effects and ease of use, this is a extremely important drug to try. Please, everybody should try Ampyra.

        Chrissy

    • NoirFan says:

      The base price of the drug is $1,000+/month. However, as others point out, one can apply for financial assistance through Acorda. My insurance is paying half the cost of the drug, Acorda pays for half minus my $40 co-pay. Before this, I was taking Fampridine obtained from a compounding pharmacy. It cost only $100/month but I had to foot the entire amount. My MS nurse told me it may take up to two weeks to feel the full benefits of Ampyra because it is controlled released.

      • David S says:

        NoirFan,

        My wife has had MS for about 10yrs now. With the release of Ampyra new hope and enthusiasm has entered our lives until we found ourselves in the "Donut Hole" with our coverage. Now the question is do we pay the 1,000/mo until the gap is filled, or do we try something else? (Noticeable walking & movement improvements since she started taking Ampyra 5 weeks ago).

        I was curious about Fampridine obtained from a compounding pharmacy and how it compares with the Ampyra (Dalfampridine)???

        We are going to continue with Ampyra as long as financially possible, but I'd like to know what other options we have if we can't afford it in the future.

        Thanks

        David S

    • Joan says:

      Hi,

      I have a friend who has MS and he called me today as he found out that with his Medicare Part D pharmaceutical plan that he has to pay $1,060 for 1 mo How do you get yours so inexpensive. He is not going to take it as he can't afford it. Thanks.

    • Gail Zercher says:

      It all depends on your insurance. HORROR STORY Started taking it 3 weeks ago having good improvement.
      Paid $69. Now I must pay $850. then !,200 until i have spent $4,500 out of pocket, then and only then it will be $60This is what happens to senior on medicare in America.

    • christy says:

      It costs me $10.00.

  45. Shyla says:

    I have had MS for 8 years. For years I tried every medicine on the market with no results.

    I lost most of the mobility in the right side of my body over the years. Only to find out I have primary progressive. The medicines on the market won't work for me.

    I started taking ampyra 4 weeks ago with wonderful results and no side effects as of now.

    The studies about the speed of walking are completely not important. The ability to have the mobility to walk is important. Ampyra has improved my mobility. I walk a lot better than I did prior to taking the medicine. I have some movement in my hand. I'm actually able to go to the gym now to help build the muscles that I haven't used in years.

    I'm not saying I don't have my bad days here and there where nothing wants to cooperate real well but, even on a bad day it's better than before the medicine.

    This drug has given me the chance to function somewhat normal (before MS took those functions from me).

    My children had to see thier mother fall apart over the years…now they see a slight spring in her step…and dancing around the house with them on really good days.

    So, good, bad…I'll take back every single thing I can get back..no matter how big or how small.

  46. ld wear says:

    Be careful of this med. After about 6 weeks on it I`ve suffering my first excerebation in years…

    • Sue says:

      I went on Ampyra 3 months ago. I was so happy with it within 2 weeks. I was doing so good walking I was so happy, posture was better, speed, and my limp was practically gone. Around the end of the second month I started getting worse. I am worse now then I ever was. I go see the doctor this week and I hope it will be as simple as just stopping it or ween off of it.

    • Gail Zercher says:

      i HAVE HAD ms SINCE 1978 And 3!/2 weeks ago started taking Ampyra and have also seen an improvement in my walking., Was very excited. Found out yesterday I must now pay $850. and then 1,200 untilk I pay 4,500 out of pocket, then get it fo $60. I can't afford that and seems there is no where to turn. Ampyra has assistance but family can't have more then 50,000 in yearly income. That's my husbands money not mine and the money is tied up in our home etc. Not money you can touch.

  47. Mike says:

    I am writing to those of you who are living with MS, because I understand the issues here, I was diagnosed with MS in 1989. I have been secondary progressive for at least six years. I have been through all of the classic symptoms and been treated with most of the available medications at one time or another. I've had an implanted intrathecal baclofen pump for five years. I have been legally disabled for five years. I can usually walk with a cane for a couple hundred feet or so, depending on the temperature, etc.

    I have been on Ampyra for six weeks. It is a 10mg dose aspirin-size tablet taken twice daily. It is prescribed by a neurologist/physician. A bottle of 60 pills is sent directly to your home once a month. (it's not picked up at a pharmacy). I started feeling "something' after about two weeks. After four weeks, I was sure that my walking had improved substantially. My wife and friends agree. I walk with better posture and can walk without a cane at times, although I usually use one still. It doesn't seem to improve other symptoms like spasticity, numbness, or ms-pain, but there is no doubt that my walking is much-improved.

    Here are a few other comments on this article:

    (1) cost: Ampyra may 'cost' $10,000 a year, but my cost is $5 per month. Like my Copaxone, which 'costs' $3,000 per month, but my cost is $10. It may be costly for the insurance company.

    (2) side effects: The listed potential side effects are virtually identical to those listed on many of the ms meds I've taken. I've yet to have any side effects. I think they have to list all the things patients report when these drugs are being tested.

    (3) benefit: You don't take Ampyra so that you can walk a second faster than before. Walking speed was used during clinical trials because it can be easily measured. I am sure I can walk faster now too, but the benefit is about 'ability' to walk – your legs moving more normally, your walking posture, your motions (and thus your balance). I can walk 'better' now.

    (4) Yes, you can call Ampyra an 'additional' treatment. But you can say that about every MS treatment.

    I know that Ampyra will not help everyone with MS. For me, it is a winner. Hang in there. You're not alone. -Mike

    • Rosemary says:

      Dear Mike, Thank you for your writing about your response to this drug. I am a caretaker and my husdand has MS. His walking is poor and he has a limp. He has not used a cane but often is so unstable that he requires a hand on a wall, or railing. He has been prescribed Ampyra and we hope to have the insurance support his doctor's reccommendation. We look forward to positive results. We have bought balance braclets, tried energy fruit drinks, and are always grasping at straws. Maybe he too, will experience success in his ability to stabilize his geate. Thank you for your positive attitude.

    • Alan says:

      Mike – Your comments are very thoughtful. I can tell your have MS, as do I, and you get it.
      People who live with MS everyday will understand.
      Very good description of feeling and benefits as compared to walking speed.

      Please visit MSWorld.org or our MSWorld Facebook Fan Page at: http://www.facebook.com/MSWorld.Fan.Page.
      I think your comments would be helpful to others.
      You can also search for any topic on MSWorld's Message Boards.

      Thanks for your comments!

      Alan

    • sONJA says:

      i JUST WANTED TO SAY THAT YOUR POST IS vry INSPIRING TO ME.i JUST SAW MY NEUROLOGIST YESTERDAY AND WE DECIDED TO TRY AMPYRA.A BIT SCARED i MUST SAY BUT YOUR POST IS QUITE CALMING.i HAVENT BEEN ON ANY MS MEDICATIONS YET SO..I NOW HAVE TO GO THROUGH THE BLOODWORK,OPTHOMOLOGIST AND WHAT EVER OTHER TESTS THEY REQUIRE.tHANK YOU FOR YOUR WORDS AND GOOD LUCK….THE FACE OF MS IS CHANGING THANK YOU!

    • John says:

      Mike,

      It seems as though I'm on the same path as you. I'm a male, 47 years old and have had MS since 1998. Symptoms started slow but, the last 2 years have got progressively worse. I can walk without cane for short distance, still able to work out on elliptical. I never really have an exacerbation, I just get worse over time. I took Avonnex for first 10 years then tried tysabri (which made me worse so I stopped after one treatment), then switched to rebif. Since most people don't have symptoms similar to mine, I wanted to ask you a few questions.
      How old are you?
      Did you try tysabri?
      What is a implanted intrathecal baclofen pump ?
      Do you use sole merdol? how often?
      What part of the country do you live?

      Thank you
      John
      jr_ewell@comcast.net

    • Janet says:

      Dear Mike, I totally agree. Ampyra is a miracle drug. I was not able to easily walk without assistance before ampyra. Now I can most of the time. My physical therapist is in awe at the difference, too. It has definitlely improved my quality of life, and has given me hope for long term relief from this insidious disease.

      I did have an exacerbation in July, but I had been under severe stress with a flood in my basement and my air conditioning broken for three weeks. At the time I was not taking any other medication as I am taking a one year drug holiday from tysabri (which I also recommend by the way). I took a break for a few weeks, and am now taking ampyra again. I have not had any further problems. I would suggest that, while taking it, patients work to control stress as this seems to have been a conributing factor for me with regard to the exacerbation.

      It is very important that I keep working for financial reasons, and ampyra gives me hope that I can for an extended period of time. It allows me to keep moving in a way that I couldn't before. I fight this disease with every weapon I can, and ampyra is a powerful weapon in my arsenal. — Sonja

    • shaya says:

      Thank you for sharing your experiences .I want to contact with you,if it is possible.I live in Canada and need some helps to understand how can I take this medisine.Please tell me how can I contact to you?Shaya

    • randy says:

      mike are you taking both copaxone and ampyra, i've been on copaxone for one year, with no real responce.

    • FELICIA says:

      Hi, my brother was diagnosed with MS – Primary Progressive form since 2000, he is getting worse and worse now. Please help, we live in Europe, Romania, and here nobody knows about this drug. At least please tell me in what state/country i can find this medicine and at what cost, it is vital!! Thank you and God bless you. Please write at FELYIANCU@YAHOO.COM.

    • Laura says:

      What kind of insurance do you have? My UHC Secure Horizons is making it hard to get any new drugs.

    • Dave says:

      Mike,

      Thanks for your insight. I too have SPMS just affects my left leg. All they tell me is that it might help me walk faster. What I read in your post is that your leg(s) actually functioned almost normal. I have been approved by my insurance for the drug but have been puttiing it off. You give me a glimmer of hope.

      Thanks – Dave

    • Denise says:

      thanks – I will hang in – not easy and very depressing – especially when you have a womderful 12 yr old activ e boy

    • Audrey says:

      Good for you, Mike– I'm so pleased to read about your success with Ampyra and would love to see an update!
      I've lived with MS for 25 years now, had never been on any drugs till a few years ago when my dr. prescribed Baclofen once I got diagnosed with sec. progressive MS. Helped manage my spasticity. Then Ampyra about a year ago. Definitely made improvements to my staying vertical and, esp. after 3 pm, staying awake. I really could care less if I walk any "faster"– just getting me taking steps is terrific and that's what Ampyra's doing for me! Regards, Audrey

  48. scott says:

    Obviously the person writing this article does not have MS, those that do are thankfull for anything that may help, even the regular treatments do not all work for eveyone, I am going on my 3rd treatment drug next week as the others have not made any difference. Ampyra is not available thru normal drug stores at this time. Your Dr. has to send a prescription to the manufacturer along with paper work that is available from thier website. Once approved they will set up delivery thru your prescription plan. they have a very good co pay assistance at this time , it is costing me 40.00 per month for it, have only been on it for a week so I don't expect any major changes for a few more weeks but plan on giving it 90 trial to see if it helps at all.

    • Jhon says:

      Hello Scott, my name is Jhon , i was diagnosed in the begining of 2010 and i will like to know how do i get financial help for this medication, or what i have to do. any help will be apreciate.

      Have a great day

    • ANN says:

      I just started taking AMPYRA 10MG DEC 7,2010 I DO NOT LIKE THE SIDE EFFECT I HAVE. INSOMMIA ,,DIZZINESS, HEADACHE ,WEAKNESS BIG TIME WITH BALANCE, INDIGESTION. I CALLED MY DR. THIS MORNING. WAITING FOR CALL BACK. YOLD NUSE I WILL NOT TAKE IT ANYMORE I WAS DX WITH MS AT THE AGE OF 50 NOW I AM 72

  49. judy says:

    Ampyra is a twice-a-day med. I've been on it for about a month and it has helped me. However, I had been taking 4-ap for years and Ampyra simply replaced my compounded 4-ap med so I have been receiving benefits of the drug for years.

  50. carys sullivan says:

    A freind that has MS in england,would like imformation about this drug.

    Can you get this drug in the UK?

    • Mary Rice says:

      While the maker of Ampyra has submitted the drug for approval in the UK, approval hasn't been granted yet. So no, it is not yet available outside the USA.

      • karen says:

        Mary, once again I am troubled by what seems to be unforgiveable ignorance about Ampyra. I must be misunderstanding what you are writing. You say that Ampyra is not available in the U.S.? That is simply false. It became available by prescription on March 1st. Please tell me I am misunderstanding what you are writing. I also wonder why you would write about this when you are unfamiliar with the dosage, availability, cost, effectiveness, side effects, etc? To what purpose? I sincerely hope that no one who is suffering will see your headline while googling ampyra and be deterred from trying it…

      • karen says:

        i am happy to see upon re-reading that i did misunderstand as the author is explaining that it isn't available outside the u.s. yet. my other questions remain. this is the second article i have seen from a seemingly non-MS journalist with a considerable microphone who is casting significant doubt on this drug. i have seen folks with MS reply with gratitude saying they were almost going to try it, but now will not, etc. i find this very unfortunate

      • Mary Rice says:

        Karen-
        While it is true that I am not a MS-specialty journalist, I do encourage anyone who is considering taking Ampyra to do two things – read the studies for themselves and talk to their doctor. It is possible that Ampyra could help an MS patient – but it is also important to realize that the drug, in every clinical trial, showed a barely statistically significant increase in mobility.

  51. Melanie Meinnert says:

    I've been on Ampyra for 4 weeks and it has not done a thing for me. This bothered me until Merideth Viera said it hasn't done anything for her husband, Richard Cohen. Ampyra was a topic of discussion on the Today show on Thurs. of this week. It makes me wonder if the drug is less effective on people who have had this disease for many years I was diagnosed 17 years ago and am now secodary progressive and at a rapid pace. Good luck to all who go on it and I wish you much success and good speed.

    • Tina says:

      Hello Melanie,

      I have had MS for 25 yrs. Remitting relapsing for 21 yrs and the begining of secondary progressive, worsening slowly the last 4 yrs. I started Ampyra 1 week and 4 days ago. I believe that I am walking a bit better since starting Ampyra, butnot empressed up to this point, still hopeful. I do wonder about whether the damage has taken it's toll? So many questions and no answers.

      That is my comment in regards to Ampyra. Thanks for asking.

      T.

    • Lana says:

      Ampyra has helped my walking speed (which almost stopped) and reduced my spasms and pain. I am also able to start riding my mobilized bike, because my legs are not going into spasms. I can feel it, when it is time for my next dosage, because my walking slows down. My side effects – swollen feet, ankles and lower legs.

    • Irma says:

      Melanie
      I have had MS for 23 years and use a scooter in the world and a standard four legged walker at home (cant use wheeled one due to instability). I started Ampyra 3 weeks ago and have had a significant increase in speed of ambulation. For a study prior to starting the drug I had to walk for 6 minutes and went less than 100 feet. After three weeks I was able to go about 140 feet in the same 6 minutes. I am happy to say that I have seen many other improvements too and hope they continue and I will be able to walk unaided soon.

    • schroederra says:

      try the MS Recovery Diet by Judi Bachrach and Ann Sawyer. A lot of work, no sugar, no flour, no milk-but it works, Does not work for those who feel that eating sub-nutritional food is enjoying life.

    • Deb Taylor says:

      I was diagnosed less than 10 years ago and my walking has gotten so bad I need assistance getting around. My doctor put me on Amprya last month and it hasn't done a thing for me. After looking at the cost of the drug I have decided to stop talking it. I am glad I had the chance to read yours and other's post it has helped. Good luck you as well

  52. Tadd says:

    Hi Josephine,

    I have MS and can't walk anymore. I can still stand with some assistance. I use a powerchair to get around. I am considering taking Ampyra. How do you order it? Do you think the benefits outweigh any side effects?

    Tadd

    Covina, CA

    • Mary Rice says:

      Tadd-
      The best thing to do is talk to your doctor. She or he can discuss the benefits and side effects with you, and write a prescription if you both think Ampyra is a good thing to try.
      Mary

    • Jake says:

      Talk to your neuro. I've been trying to get on it for two months. Lots of paperwork evidently.

    • Kathy says:

      Dear Josephine, I have just started on Ampyra. Before my nerologist would consider putting me on this drug I had to be timed walking so many feet. I had to walk within a certain time frame of 60 sec.or I would not be eligable to take Ampyra. I use a walker and or a wheelchair depending on the intensity of my leg cramps and fitgue.You should have seen me dragging my feet down the hall as fast as I could. I barely made the time frame allowed,
      I am not sure you will be approved for Ampyra if you can not walk. I personly believe the chances of regaining mobility and the ablity to maintain independence is worth the side effect warnings. Even Asprin comes with warnings. I suggest you visit your neruologist and get his advice. I wish you all the best.
      Kathy C

    • Mark J. says:

      Hi Tadd,

      I am in the same shape as you are as far as mobility and I have been on AMPYRA since May 2010. It does increase the strength in my week leg considerably, so I would think that you should consider trying it. To order the Ampyra you need to consult with your Neurologist and he orders it as a script. As far as side effects everyone is different, my lips tingle on occasion and some lower back pain (but nothing that a little Vicodin doesn’t’ solve) but no other side effects. For me the drug has had a positive effect. Mark J.

  53. josephine says:

    After being on ampyra for a few weeks with nice results suffered my 1st major exaherbation since being diagnosed.

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