Ampyra Forums (Page 2)
Recently active Ampyra forums and community discussion threads. Post your question or story about Ampyra and connect with others who have experience with the same medications. No registration is required and your identity remains anonymous.I have been taking Ampyra for 1 month tomorrow. I have only seen a very, very slight improvement. I would like to get some feed back from other people that have SPMS on how they are doing ## I also have SPMS and will be on Ampyra for 1 month tomorrow. Just before starting ampyra, I got to the point that I started falling down from a standing position. After starting ampyra, that falling has stopped. It is now easier for me to turn over in bed and the feeling of weakness in my legs is getting less and less. I read that one person who also has SP MS waited 2 months before really noticeable change for the better happened. I hope for the best. ## Ampyra is a very new medication, just recently approved by thee FDA, it contains the active ingredient Dalframpridine. It is most commonly used to...
5 REPLIES UpdatedAs a potassum blocker, Ampyra was once a "bird poison" Doctors get kickbacks, and guinea pig patients. nerves need a balance of sodium and potassium for nerve conduction. It is counterintuitive to block potassium. It prevented birds from flying. ## And Warfarin was a rat poison…. In all seriousness, all medications are toxic if you take too much, or if they are taken by the wrong species. It's just the nature of adding chemicals to the body in an attempt to improve quality of life and get a specific desired result. Your concerns are appreciated, but I can assure you that it's use in humans has been very carefully studied. For it to be used in humans, it had to pass rigorous testing, be purified in a different form than that used in birds and the dosing ...
1 REPLY UpdatedIs anyone paying out of pocket for Ampyra? The monthly retail cost is prohibitive. If you don't qualify for financial assistance, it is next to impossible to take this drug without going bankrupt. All this for a drug with a very unimpressive track record. I'm having difficulty justifying this experimental journey unless the drug company supplies the meds at no cost. Am I alone in my thinking? ## Did you try the assistance program directly from the manufacturer? Those programs are often more generous than those provided by your county, or state. You can find out more and apply by calling them at 888-881-1918. Learn more Ampyra details here. ## I am waiting to receive a call back from their financial assistance program. So far, I have heard nothing for 3 days. I hope I qualify bec...
3 REPLIES UpdatedI have to inform everyone I can about this issue. My doctor wants me to take Ampyra and she handed me the Ampyra Patient Support Services Center Prescription & Service Request Form to read and sign. In Step two the Read and Sign Patient Authorization section there are five reasons for the release and collection or medical data and they are: (1) to establish my eligibility for benefits; (2) to communicate with my health care providers and me about my medical care; (3) to facilitate the provision of products, supplies or services by a third party including, but not limited to, specialty pharmacies; (4) to register me in any applicable product registration program required for my treatment; and (5) to evaluate the effectiveness of AMPYRA's education programs. This all sound innocen...
9 REPLIES Updatedcan anyone advise whether the Insomnia side effect wears off? ## I haven't taken it myself, so I can't speak form personal experience, however, in theory the side effects of prescription medications should reach their peak at around 4 to 6 weeks of use, when the medications reaches its full effectiveness in the body. After that they should start to taper off in severity, as your body gets used to the medication. Learn more Ampyra details here. How long have you been taking it? Have you talked to your doctor about it? ## I sure hope so... I take mine 7am and 7pm. u might want to do 6am and 6pm. When I was started with amitriptyline for headaches, sleep is not an issue at all. Maybe too much at times. take care.... ## I've been taking Ampyra for MS for a year and have experien...
3 REPLIES UpdatedI FIRST STARTED AMPYRA ABOUT 3 MONTHS AGO. I NOTICED RESULTS AFTER 10 DAYS. THE OVERALL STRENGTH TO MY LEFT SIDE WAS FANTASTIC, I THOUGHT THIS WAS THE MIRACLE I HAD BEEN PRAYING FOR. NOW IT SEEMS THAT INITIAL SURGE IS NOT THERE. MY LEGS DO FEEL STRONGER, BUT MY WALKING IS NOT ALL THAT GREAT. I LIVE IN THE M/WEST WERE WE HAVE HAD A HOT/HUMID SUMMER. SOME SAY HEAT IS A NEGATIVE FORCE TOWARD MS MEDS. DOES ANYONE SHARE MY FEELINGS....I WILL CONTINUE AMPYRA AND HOPE FOR THE BEST. ## There have been mixed reports regarding the use of this new medication. There are many posts on our site about it, here are some links: And for more information on the medication: Is there anything I can help you with? ## I HAVE BEEN ON AMPYRA FOR THREE MONTHS. IT IS GREAT FOR ME. THERE HAS BEEN A HEAT WAVE HERE ...
3 REPLIES UpdatedHello, I am an MS patient with walking difficulty,my doctor has put me on ampraya,the first week i took ampraya i felt very good but follwing weeks i am feeling as before i started to take the medecine,please let me know whether i am doing anything wrong ## If ur not having any side effects, continue to take Ampyra. I have been on for almost 15 months now. I do have ups and downs, but definitely will continue to take it. I do not think ur doing anything wrong. Just be patient and keep us posted. take care.... ## Yes, while you may feel some benefit from these types of medications immediately, it does take anywhere from 4 to 6 weeks, for them to reach their full effectiveness level in the body. If you've been on it longer than that and it still doesn't seem to be helping, or is c...
2 REPLIES UpdatedHi everyone. I was hopeful that Ampyra would help my walking, which has been challenged these past months (though I have had MS for 15 years). I took Ampyra as directed for 5 1/2 weeks and then my right side of my face palsied (or as my neuro. called it a "hemi-facial spasm"). I also suffered from double vision and no improvment w/ walking (if it was not worse?) I stopped taking Ampyra when all this happened, and thankfully the exaserbation passed in half the time it usually takes (3 weeks). I did report this to the FDA (I'll post where after I put this post up b/c I have to look in my email.) Anyway, I wish you all luck w/ Ampyra, just wanted you to be aware of my experiences. ## The follow-up email to make a voluntary report to the FDA is: [email protected] best to you! #...
3 REPLIES UpdatedOn ampyra 2 days. Severe dizziness / light headedness. Does this get better with continued treatment? Ambien for insomnia? Advisable to take with ampyra? Strange, but think I feel very slight difference already! Is that even possible? Thank you in advance for any input. ## Ampyra contains the active ingredient Dalfampridine, it is mainly used to help treat MS symptoms. That said, yes, those are normal side effects, along with: nausea and drowsiness. They should wear off as your body adjusts to the medication, if they do not or they get worse, you should speak with your doctor immediately. Yes, it is possible, some people do respond to medications very fast. There was a recent post with a lot of people talking about their experience with this, you can read it here: Do you have any other ...
4 REPLIES Updatednew walking Treatment for MS. ## 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... my email: [email protected] ## Ampyra is a very new medication, just recently approved by thee FDA, it contains the active ingredient Dalframpridine. It is most commonly used to help treat MS symptoms. That said, yes, headaches are a common side effect, which should wear off as your body adjusts to the medication. If they don't or become severe, you should speak to your doctor. Other side effects may include: nausea, insomnia, dizziness and back pain. Read more here: As with any medication, it is successfully helping some people and not others. There are several other po...
5 REPLIES UpdatedI am amazed to see the comments here in regard to ampyra...I was fraught with disappointment when i realized my expectations were way too high. I have been on ampyra for 4 months... similarly as others i saw an an improvement right away, as did my bf,,,,needless to say we were so excited....then 2/3 weeks later i started feeling nausea during day & evening... dizziness as well... my balance was already affected my ms...now became worse....I was weaker than usual......take gabapentin (antispasciity) and helps me sleep....now i insomnia ...I hate ampyra i was so excited to start this...i have had negative effects of all 3. copaxen ribif avonex......now this...the only one that i liked was steroids (solumedrol) when i had a relapse...: ) i have a weak left leg gait and balance problems...
23 REPLIES UpdatedThe first month of Ampyra 10mg was promising. Since then there's been quite a drop in effectiveness. At my next doctors appointment, I'm going to inquire about a possible doseage increase. For those that have had success, what doseage has had the best results? I do have faith that this will/can work, just looking for a possible better approach. ## SO far, Ampyra has seemed to be about a 50-50 medication, going by the other posts on here about it. There have been people that got great results from it and about the same number of people that didn't. There are even others like you, who seemed to do great, for awhile, then it kind of tapered off. Here are the links to some of the other conversations on it: And for information on the medication itself: I do wish you the best of l...
1 REPLY UpdatedI have been taking this medicine for about two and a half weeks now and actually had a relapse in my right leg and my right side. I have noticed a huge difference in my relexes and in my walking but I have this hardened feeling in my stomach kind of like numbness and I am also having a sharp pinching. Has anyone had this? ## Ampyra contains the active ingredient Dalfampridine and from what I can tell from other posts on here, it seems to be getting mixed results. Some people are having very good luck with it, while others have had to stop taking it, due to problems with side effects or a lack of efficacy. It takes about 4 to 6 weeks, before it will reach its full effectiveness in your body and you can really know how it's working for you. My suggestion would be to discuss these issu...
3 REPLIES Updated10th day with Ampyra. Day 8 was great!!! I was actually walking normal.... amazing. Day 9, I'm back to the stiffness and off balance, walking with a limp. Talk about depressing!!! Is this normal? I want is back!!! ## Ampyra contains the active ingredient Dalfampridine, it is used to treat MS symptoms. That said, it does take a month or so for most medications to reach their full effectiveness. On the other hand, the medication may just not work for you, as they do not all work for everyone. How long has your doctor ask you to try it? Side effects to this drug can include: nausea, dizziness, headache and drowsiness. Read more: ## Hi Diane, How are you doing now with Ampyra? I started on January 2011. I still experience the dragging of my legs on and off among other things. take care.
2 REPLIES UpdatedI have MS diagnosed for over 34 years and was originally diagnosed with relapse and remitting. the last 10 years i have moved into chronic proggressive category. (i am 58 and still walk for short distances with a cane). I have been taking Ampyra for M.S. Symptoms for 1 month. I have taken 10 mg. 2x's/day as close to 12 hours apart as possible. I noticed improvement in speed of walking 2 days after I began taking it. but, I have also experienced much difficulty getting to sleep and staying sleep. I also take baclofen for spasticity. What is the best way to handle the insomnia? I have been taking 5 mg. Of benedryl, but it makes me foggy. ## I have had long term insomnia for many years before taking Ampyra. The solution after many tries to get it right was one valium and one remeron be...
3 REPLIES UpdatedMy biggest problem is fatigue. Is anyone taking another medication. Ex: Ritalin ? ## I take Ritalin when I have that walking through the mud feeling, particulary when weather is hot/humid. It's a HUGE help. I just take 1/2 dose (5 mg) most days, but sometimes have to take another in afternoon. Easy med...no side effects, but be careful you don't take too much cuz it'll make you jittery. Since Ive been on Amprya, i haven't taken ritalin, but do recommend it. Good luck ## I am doing great on Ritilan for fatigue. I used to take Provigil, but Ritilan is cheap and effective for me.
2 REPLIES UpdatedI have been on Ampyra for 3 months. After a few weeks I could walk faster, stopped dragging my left foot, didn't use my cane at all. But after about 2 months, I find my strength lagging...I'm back to dragging my foot...not as bad as before...my balance isn't as good...not sure what to think. Do I need a stronger dose? ## That could be the issue, have you spoken to your doctor about it, yet? There have been quite a few similar comments about this new medication, regarding it working for a brief period and then its effectiveness falling off. Here are the links to a few other threads about it: ## Does anyone experience neuropathic pain with their MS and if so, does the Ampyra help it?
2 REPLIES UpdatedI been on amp since may 25th 2010. It took about 2 weeks to work. So needless to say, I thought it wasn't for me. However, when it kicked in I was almost running. I felt whole again. It lasted for about 10 minutes, then quickly back to the usual pain in the butt (ms). Whenever I drink coffee, I seem to get an extra boost in my walking, both in the length of time I can walk and my stability and energy. So, I guess the amp with dunkin donuts iced is a good combo for me. In this last week, though, I feel like the amp is no longer working. But I do know that one of the side effects of amp is an ms relapse. So I am wondering if this is what is happening to me. So now I am just waiting to see if the amp kicks in again. ## Did you notice your legs numb or minimal vibrations.? ## I have bee...
3 REPLIES UpdatedCan I take Ibuprofen for the head-Acheson Ampyra? Or before my Rebif shots? ## Yes, I am on Ampyra as well as Rebif. Advil, Tylenol or whatever type of pain reliever for your headaches is fine for both as well as will help will any fever, aches and chills that you may have with Rebif injections. I am a RRMSer for 4 years. On Ampyra for almost 2 months and the jury is still out on the benefits. I think the 100+ degree heat has possibly taken away any benefit that I may have gotten from it. The heat zaps me!!! My headaches with Ampyra lasted about 3weeks then went away. Good luck and God Bless. ## Thanks Alice. I haven't even finished my first week so I need to certainly give it time. God Bless you and thank you! ## I am on Ampyra and Copaxone . I was on Rebif before and yes you can t...
5 REPLIES UpdatedI have SPMS that is rapidly progressing. I was so hoping for positive results from Ampyra, but it actually made me worse because of my balance--or lack thereof. I'd forgotten that was a side effect. I have a bladder infection now so my neurologist told me to stop taking it. It didn't do anything for my spasticity either but instead of drawing my legs up, they extend straight out and I can't bend them. I was so disappointed that Ampyra hasn't worked for me and happy for those it has. ## I am very sorry to read this, it would have been great if it worked for you. However, like any medication, it does help some and not others, they just don't work for everyone. Has your doctor suggested an alternative? ## I have had psms for 32 years. I still work but use a walker at wo...
2 REPLIES Updated