Ampyra
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I have been taking Ampyra for 4 days.I have noticed a decrease in fatigue but headaches daily. The question is will they eventually go away on their own, or do I skip a day and see if they stop or quit til I see the doc ?

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Hi there,

you are not supposed to skip a day, so you should continue with it and see if the headaches subside; if they do not go away, I would recommend your speaking with your neurologist. By the way, I'm writing from Canada, and it's called FAMPYRA here. Good luck!H

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I took my first dose of Ampyra at 6pm and could not go to sleep at all that night, got up at 6am and took second dose, felt dizzy, headach and body aches like I had the flu. very disappointed. wanted this medicine to help me walk better as I have numbness and weakness in my right leg and foot. did not take any Ampyra today because I could not miss work. How am I supposed to walk better when I feel like I cannot get off of the couch from the side affects?

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I have been on Ampyra for about 5 weeks and notice an improvement in reducing fatigue. The first three weeks on it I had incredible headaches in the morning, but they went away.

Do NOT take anything with acetominophen including the previously named over-the-counter headache drugs above. If you look up the drug interactions with Ampyra in the Physician's Desk Reference, acetominophen can cause seizures in combination with Ampyra. It has this reaction with other drugs, so look it up! Do not assume your neurologist knows this. And it isn't clearly listed in the consumer information from the manufacturer.

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Hi, been on it a year the only things is weakness an the worset back siatica type nerve pain drove me to morphine an it dosent help i stopped it 2 days ago nerve pain almost gone, pain so bad i was thinking bad thouughts if you know what i mean,will never take again. Rhonda




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Thank you 24char. I also have chronic back pain. I have been on Ampyra since the summer. I stopped because I had major surgery then rehab because of complications. I see my doc in about 10 days. I am so confused about whether to take it or not but you have encouraged me. I am 53 was diagnosed in '95 and took Avonex for 13 years. I finally quite because it was so hard on me and getting harder. My brother and nephew have MS. My brother is on Copaxone but having trouble with it after several years. My nephew is on the new oral med and my brother is trying to get on it too. I will keep people posted about that. I am confused about the pain I am having everywhere. Does anyone else experience this? We are getting a new MS facility in OKC - I will also keep people updated on it. Dr. Gabriel Pardo is the founder. Try goggling it - I have high hopes. I will see it first hand 3/24. Let's keep on blogging! Together we can! I also have a Bioness L300 for foot drop - it is fantastic! I still use a walker but it is great!

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I was surprised to hear of all that have had headaches when starting the Amprya. I have had no bad side effects from it.. I usually have problems, could not use Avonex or Rebif. I am on Copaxone but only inject half as they make me so sick. I was concerned about the possible back pain as I have a chronic back injury which causes pain, but it has not increased. I attended a seminar last month and learned a lot about how the drug works by filling in the "gaps" in our spinal cord that have been damaged. That may be the cause of some of the pain at the beginning. I don't see how stopping and restarting could make any difference, seems to me that it would just set you back. It has been a wonder drug for me, I plan on walking a marathon this summer with my grand kids and daughter, something I never could have done before. I was dx'd in '96. I started Amprya in June '10. All these drugs work differently for us, maybe due to where the damage is? Good luck to us all.

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Hi HSS, though I am not (yet) on Ampyra, I went to a seminar Wed, 3/8/11, given by Dr. Tullman, an MS neuro. at Columbia in NYC. He advised that if we do not see any improvement w/in 5 weeks, then it is unlikely that we will, and to stop taking it. What does your doctor say? Good Luck on your healing journey!

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I have SPMS & have been on Ampyra for 2 weeks. It's amazing. I usually use a scooter & could only walk about 2 city blocks before my leg died, Now, it's seriously easier to walk.

My question is for anyone with PPMS: How did you get your MD to prescribe this? I want to recommend a friend with longstanding PPMS get her doctor to prescribe it, but am afraid she'll be turned down bc she's wheelchair-bound. Thanks, Arlene


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I wish we could all get answers but I think MS is so unpredictable that we make assumptions that are based on ???? I attribute things to the heat, the cold, the barometric pressure etc. when there really is no rhyme or reason. Stress and illness have been huge factors for me right now. I am also distressed that when we reach a certain point the drs. just randomly dismiss everything wrong with us. I swear I could walk into an ER with blood spurting from my eyes and a doc would nonchalantly remark - oh it's your MS again!

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Will u be staying with Avonex? despite of setbacks? I wonder when will a doctor consider changing treatment plan? I was dx 97. started betaseron 2000-2001 then nothing until 2008, resumed betaseron and set backs started. Would that be the unwelcomed progression of MS? Right now, Iam thankful of Ampyra. It's definitely helping eventhough it's not perfect. Any inputs are welcome. thank you.

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I notice change for the better in my walking (on day 2). I was walking so well for about 5 -6 weeks and then the meds seemed to stop working. I am still taking Ampyra and avonex and I am not walking well at all. I did try stopping Ampyra for a week and restarting, but it didn't work well like when I first staryed taking it.

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thank you all for the feedback, it is highly appreciated!

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I discovered the side effects of Avonex became increasingly worse with the number of years I was on it (12 almost 13 years) and age (I am now 53) made it even harder. I am having a setback right now but it could be a number of things. Like you have heard - the first few months seemed great but now I wonder. I have not seen anything great like walking alone or running but like was already mentioned everything works differently for everyone. My brother takes Copaxone and his son is now taking the new oral Rx. Yes, it runs rampant in our family.

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hello, I want to ask if u have up and downs with walking imrovement while on Ampyra. What other MS drug do u use?
Iam on Betaseron for more than 2 yrs and wants to try another one because I feel the progression since i restarted Betaseron. Might be coincidence, but.....
thank u for any inputs.

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I have been on Ampyra since the first of June. I have had a lot of improvement, walked a half marathon with my daughter last August, could not have done that before. I am on Fentynal, and Percocet for back pain and have not had any problems with those either. I think I am still improving, harder to tell in the winter but I will definitely stay on it. I was dx. in '96 and this is the only MS drug that I can tell works, the others, I don't know, but do comply. Good Luck, just remember all the drugs work differently for all of us.

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The headaches for me go away after a week. I went back on Ampyra because the sudden pain didn't subside. To the person who had trouble with cough syrup, I had a cold and took Nyquil for 2 days - my pain went away. Since then I have taken Lortab, hydrocodone, aspirin and Midol to relieve the pain also Doan's pills. Nothing works for more than a few days. I had an exacerbation when I stopped taking it that is why I am back on it. I need to call the doc but we are in a blizzard.

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Hi my doctor wants to prescribe this to me but I am curious since it is so new. How long have you been on for and do you notice any improvements? I read in other people's comments that after 3 months it seemed to stop working. It sounds great in the begginning but not so great after. Can someone please give me feedback? I would love to walk normal again as I have two young children.

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I have taken vicodin and tylenol while on ampyra, due to back pelvic bone pain. it seemed okay...my pain kind of resolved after day 4. it's the cough syrup i took later on that i had a problem with ampyra.

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I have been on Ampyra for a little more than a week. I also have upper back pain (more like stress near my shoulder blades). I would like to take Ibuprofen PM or Advil PM but do not know if I can take those two while on Ampyra.

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I have been on Ampyra for months. Had to take a break while I was in hospital having my colon removed - then 17 days of in-hospital rehab because of complications of surgery. Absolutely no pain in hospital (even after I quit the drugs). Now that I have been back on Ampyra for 4 months pain in absolutely every joint in my body is occurring. Anyone else see this? I don't know what to do! Because of my situation - surgery - rehab - in-home
rehab - I don't know if it helps or not! I have PPMS and not taking any other MS drug. Took Avonex for 13 years.

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