Ampyra Did Not Work, Walking Much Worse (Top voted first)

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

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I started Fampyra in July this year. I didn't notice any good progress but decided to stay on it for a while. However my balance has been off and my legs feel heavier as the days, weeks, months progress.

I take it once a day as I find it hard to fall asleep if I take it at night. I missed a dose last week and found that I couldn't walk without it! This meds is like an addictive drug. I can't function normally without it, and feel a lot worse if I missed a dose.

Overall, I find my walking was a lot better before I started on this drug :(
For those who had stopped the drug, how long did it take till you are back to pre-Fampyra condition?

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I am in Canada where it is marketed as Fampyra.

I started one 2xpd last week and though I do not have insomnia ( I have one sub-lingular spray of Sativex at night as I have for past 4 years ...approved medical marijuana without any "high"), But, I too sense a lessening walk ability and bad stomach pains now with Ampyra..

I too am worried I have kick-started my MS after no new obvious lesions for 10 years. I was starting to have a worsening walk on right side and hoped to have improvement. But...now worried Ampyra (Fampyra) is making it worse.

Thank you so much for your post as it gives me some insight that it may affect some of us MSers negatively. I will stay on the trial 4 week regimen and pray I am just being too impatient. My Primary MS has no other hope or meds so I will stick with the meds 2xpd and see!

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I HAVE BEEN ON AMPYRA FOR ABOUT 8 MONTHS, AND IT MAKES MY M.S. WORSE. I FALL ALOT BECAUSE I DON'T HAVE BALANCE OR I TRIP OVER MY OWN FEET. I HAVE A WALK-AIDE AND IT DOESN'T WORK FOR ME NOW. I THINK IT IS THE AMPYRA.

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"DIKUNBLUE", I am so sorry you seem to have a worsening of your MS! May I ask you so I understand better:

1-What type MS do you have...Primary Progressive or Relapsing-Remitting, etc?

2-Is your walk aid a cane or bi-lateral walker?

3-Has your docter any opinion as to Ampyra effect?

4-Do you take with or without food?

As you may have read in this site, and I have advised Acorda(Biogen) that their info to patients and doctors are different in each country as far as taking with food. In Canada and UK it is printed and also on prescription...Empty stomach....no food for 2 hrs before and 1 hr after. That should be same in all countries I think! I have Primary for past 12 yrs at age 49.

I pray you get better results!

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Dinkunblue...To be clear on my post, I am age 61, diagnosed at age 49 with Primary Progressive MS. I am in Canada.

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THANKS JAN-MICHAEL. I AM 54 AND WAS DIAGNOSED AT 39. I HAD RELAPSING REMITTING, BUT NOW I FEEL LIKE I'M GOING ON TO THE NEXT PHASE. I GO TO MY DOCTOR THIS WEEK AND TALK TO HER ABOUT GOING OFF AMPYRA AND TRY SOMETHING ELSE. I AM HAVING MY 3 DAYS OF IV STEROIDS RIGHT NOW. I DID TAKE AMPYRA ON AN EMPTY STOMACH. I THINK IT JUST DIDN'T WORK FOR ME.

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Jan-Michael: I have been on Fampyra approximately since the summer of 2012. At first I noticed a difference for the better but now my walking is getting worse, I have a poorer sense of balance, I cannot sleep through the night and and I have had a few bad falls. I am glad I tried Fampyra (in fact I was quite excited at first). My doctor and I were looking forward to good results. I am not sure if I should go off Fampyra or does someone have another suggestion for me?

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Dear Sammys mom...I am so better from staying OFF Ampyra for last 9+ months. I have no more falls and I am able to do my indoor exercise program again without sitting, Thus, I have my weight under control and that is so good. Took awhile to get over poor balance from Ampyra which like others, initially helped balance but then caused worsening walk and balance. Hope you get relief without Ampyra. My insurance was covering but I stopped Ampyra and my Neurologist agreed not good to take in my case. I am age 62 with Primary Progressive MS since 2000.

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You can't just stop talking Ampyra. Your spasticity will go though the roof and you'll hardly be able to function. I learned this after running out overa weekend. Start taking it again the DWINDLE down to nothing.

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I just found this site today July 18, 2015. I hope some of you are still checking in. I started taking Ampyra about 3 years ago, and by the time I was thinking I would go off of it, I kept hearing people talking about getting so much worse when they stopped completely. For the last year I have been taking it once a day, w/o any noticeable problems, but nothing positive either. I am afraid to go off of it completely, because I feel I might get worse. Did they ever do a long term study of this drug? How can they make these claims of it improving walking, when so many people have the exact opposite experience?

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Yes, I reported to my dr. and to the FDA. I see him soon and will discuss it further. I was aware it didn't help everyone, but I didn't expect the possibility of getting worse, after several years of largely stable walking. That deterioration has now leveled off, but there is no improvement. I hope Ampyra has not permanently affected my ability to walk.
I have read of others who stopped Ampyra because of side effects or because it didn't work for them, and whose walking got worse. I realize that w/o large studies it is not possible to know whether this is due to the Ampyra.

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I hope with more time your results will be better, not worse as with mine. I too have had no apparent new lesions for many years but I am told my very gradual decline over the years is probably due to death of nerves under the damaged myelin. My MS is secondary progressive.
Because I don't understand the mechanism by which Ampyra can improve walking by decreasing potassium leakage, I wonder whether Ampyra might actually increase potassium leakage in some people. Two physical therapists who work with MS patients said some people improve but a few like me get worse.
FYI: I have not had an MRI since taking Ampyra.
Good luck to you!

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Success! After a hard disappointing start on Ampyra(Fampyra), I seem to have made it over the mountain and my body has stopped fighting it and allowed the med to flow through properly!

I had a time of feeling my MS exacerbation had been kick-started and I had lost all or most gains...but, after reading&reading and sorting out best regimen, I have improved my walking time by 30%. From 19 secs for timed 25 foot(steps) walk to 16 secs then after my 10th day, I am at 13 secs! And I am alert (no fog), calm and know so much more how best for me!

Yes, I do think Acorda needs feedback from all especially re the value of taking ONLY on empty stomach ( the food can make one feel stomach upset and with headache for me) and seems the initial fast surge of Ampyra on me needed an empty stomach, Funny that while most Ampyra sites in United States say can take with or without food, I see Canada patient sheet and most other countries now say empty stomach best to avoid side effects. Even Acorda told me just not on a heavy full stomach but I need empty!

A pill on waking at 8AM, then I have a truly empty stomach and will take an hour to get to breakfast WORKS for me! I do have to start evening meal by 5ish so done by 6. A pill at 8PM, then a bowl of high fiber cereal at 8 and and glass of cranberry juice ensures a good digestion and bladder.

I await final Insurance okay but seems even if not covered, Acorda will limit my cost to a small cost.
Good luck to all here. Patience and figuring out for your body seems the best way to decide whether you can improve or whether it is not for you. If not, I hope BG15 will come through trials and that will be wonderful, as it may not just be an enabler drug but a cure with Myelin rebuild properties!

God bless and love to all
Jan-Michael

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I am so glad your persistence has paid off for you, Jan-Michael. I am not willing to try it again, but am sorry the "empty stomach" instructions were not emphasized when I took it.
Good luck, and thank you for all of us!

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Thanks Pat and I am sorry you had such a hard time on Ampyra! I hope you get back at least to where you were before Ampyra. (Just for others still taking, my break came after 17th day not 10th as I posted). BG15 is coming and if not that, something will be a break through. Just a matter of time. Little consolation but we must stay positive and believe, as heart breaking as it must have been for you and was for me at first! Again you have helped me in your trials and feedback...good you have made a decision and can move on.

It is not for everyone and I will be telling Acorda the differing patient info which must get corrected and be consistent. Thanks again for your help!

Jan-Michael

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I WENT TO MY DOCTOR TODAY AND MY IV DIDN
T WORK. I HAD TWO CHOICES, EITHER TSABRI OR CHEMO. I CHOSE TSABRI. THEY KEEP A CLOSE EYE ON YOU. I HAVE TO HAVE MY BLOODWORK DONE LOOKING FOR THIS ANTIBODY. IF I HAVE IT THEN I CAN'T TAKE IT. WE'LL SEE. BUT FEEL LIKE CRAP AND FELL TWICE TODAY. I HATE THIS!!

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Well Pat, I have to say that after another month on Fampyra/Ampyra my former success and lack of side effects has now gone badly. I cannot sleep and my walking has deteriorated/anxiety and I do not know if it is the insomnia or my body fighting the meds. I am glad I tried and will continue for another month but while I walk faster, the poorer sense of balance, a bad fall and now insomnia is telling me I was better before Ampyra. I am glad I tried, glad insurance covered and glad to have others' experiences. But, like you I am disappointed and am going to find out best way to come off Ampyra/Fampyra I think. Going faster and no 'drop foot' is no good if I cannot sleep and then fall. I see that stopping cold turkey can be bad (cause a seizure) so I will welcome any tips on withdrawing. This time of year is busy and I can stay the pills through Christmas and then see my doctor and unless she can make a case for continuing, I expect to stop this drug and let my body deal with whatever in its ways and I will just hope I can get back to where I was and though that was not great, it was something I could handle ( a slow decline but with balance) no falls.

Hope all MSers even if we are all MSed up;) have a good Christmas and look fwd to 2013 and the ne BG-12 to rebuild myelin sheath! I was sent a survey on BG-12 yesterday and so I guess the trials or release of the medication is moving fwd.

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I am so sorry your experience was not good, Jan-Michael.
I do know people whom it helped but they were newer to MS than I am--perhaps that makes a difference??
I am away from home on a borrowed not-good computer so will sign off. I wish you well. Thank you for replyihng.

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Kim, thank you for your story and seems many, myself included, start great on Ampyra/Fampyra, then have a poorer than we remember set-back. I wrote MS Canada and this was reply from doctor/nurse there:


Complementary/Alternative Therapy

Answered on: 12/31/2012

Q :

I feel that Fampyra is making my MS worse and it has not improved my mobility. Is it possible that Fampyra can cause an exacerbation or disease progression? Can I stop taking it and would that increase my risk of having a seizure?



A :

Unfortunately, only about 30% of patients benefit from Fampyra so it is not unexpected that one does not feel the drug is working. While Fampyra itself would not be expected to cause someone’s MS to worsen, it can cause a lot of side-effects (such as poor balance, fatigue, blurred vision) that could mimic MS progression. Fampyra can cause seizures, but stopping the drug would not be expected to trigger a seizure. It would be important that a patient discontinue the drug only after discussing this with his or her MS physician. It would be good to check with the MS doctor and/or general practitioner to make sure nothing else was going on to cause someone to feel worse while on this or any other medication.
............................................................

Kim, I have had a resurgence of improvement since I seemed to be losing my walking! I now see, for me, I have had a relapse or exacerbation and it is so hard to determine whether it would have happened anyway or Fampyra/Ampyra was the body getting confused by trying to get my walking better and my introducing the Fampyra/Ampyra?!

I think, like you Kim, the initial improvement and then set-back worried me and I questioned having started!
My conclusion is and I will see my MS Neurologist January 24, is I started on the Med because I was having "foot-drop" and slower and slower mobility, could not climb stairs! Having reviewed why I started, how I now lift my feet and climb stairs I am staying on Fampyra/Ampyra but with a few adjustments to when I take it.

I take the Fampyra at night immediately before getting ready for bed (and as I am on Clonazapam anyways and Lorazepam anyways and have Sativex sub-lingual spray for any pain) all together and ensuring no food for 2 hours before, I sleep deeply for 9 hours.

Next morning I wake and take Fampyra with my Baclofen and Imuran pills first thing so I only am eating breakfast an hour later.

I hope this helps you in some ways. I do not know any alternative to walk improvement other than a leg brace and I do not want to go that route. I have to keep trying and finding a way and so apart from being all MSed up;) from day to day, I am obviously writing on a computer and that says I am doing better.

Hope you find improvement with whatever you decide and whenever, I hope you posthow you are doing.

Jan-Michael

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Adding to my former POST:

I am asking, in the event of missing Fampyra/Ampyra for a day or a longer time, due to perhaps being away and losing/misplacing the meds, what was the reaction?

My Insurer has agreed to cover for 12 months through 'til Oct 2013 and beyond depending on my improvement. I do not plan to stop but if Insurer stopped coverage, I would be unable to pay. I also wonder in the event of a loss of meds while on an extended away time?

Lastly, for those who have been on Ampyra a long time, do you keep getting better or do you reach a leveling off and stay there. For those who came off as it caused too many side-effects and walking worsened, I wonder if you regained your former walking before it worsened by taking Ampyra/Fampyra?

Thanks to anyone able to tell their experience.

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