Ampyra Did Not Work, Walking Much Worse

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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REPORT

What has your doctor said about this?

Like most medications, Ampyra works for some people and there are others that it doesn't really seem to help.

You can read more about this drug on the page for Ampyra Details.

Did you report your problems with it to the FDA?

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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 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 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 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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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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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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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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DIKUNBLUE I hope you are better. I do not recall if you stayed Ampyra, or were able to go on TSABRI, but hope you are better. If you are off Ampyra, I would love to know how that went. I ask as I will attend an MS group next Saturday and some were thinking of stopping Ampyra/Fampyra here in Canada and wondering other' experiences coming off Ampyra. There are not many Canadians who have gone on or off it as the drug has been in Canada less than a year. So, any feedback would be great.

Jan-Michael

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Stopping for 2 wks now, while uping the exercise and using a balance technique from Kick boxing stance ( see Leslie Sansone DVD for home exercises ) , hands held at just below nose level as you walk or step up & down in a standing march , I find the extra energy from Fampyra for 3 mths has toned muscles but the poorer balance and euphorific negative tells me the time to time use of Fampyra at night only will be best for me. So, if and when I lose walk strength I will take one tablet at night so after a sleep, I can begin day clear headed and do a good walk at least til effect fades after 12 hours. By then I will be ready to take evening pill and sleep again! My 25 ft walk time is still gr8 @ 13 secs with no walker needed now. Bsmt 40 min 2 mile "walk" daily since Jan 12!

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My doctor has taken me off Ampyra/Fampyra permanently after a vision loss and foot drop return. So, I am off for 2 weeks now and hope to get back to where I was before Ampyra/Fampyra. I will do my exercises again standing or sitting as best I can. Good video one person put on YouTube:

youtube.com/watch?v=DJmQ84YqCOE

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Re: Verwon (# 1)

I also took ampyra and are walking worst than before.
Heres my story
I started ampyra on may at the same time i started studying for a big test- i also have a herniated disc and suffer from episodes of lower back pain- but it was manegable always. As the weeks passed i started getting lower back pain- eventhough i was stretching and walking a little almost every 45 minutes- i was aware of the tension to my disc that being on the same position gives, so i did all i had to do to prevent it. The lowerback pain keep scalating to the point that a week before my exam i went to my neurologist- he checked me and told me i was having a relapse- but the ampyra never crossed out minds- maybe just the stress and the heat had trigerred it- so he gave me solumedrol- no improvements, the day of my licenseture exam i went to take it with a cane. After my exams I got an mri to see if it was a flare up, it showed no new lessions or enhancements. I stopped the ampyra at this moment.
A few days later with an awful pain I went the pain managemnt clinic and got a nerve blockage (2 weeks ago) the pain alliviated a bit for a few days, now its scallating again, im using my cane 60% of the time, cause i fear falling and also to be in a better posture

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I took this drug to improve my walking with MS well now I cannot walk I cannot stand not very happy

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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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After 10 weeks on Fampyra my walk has worsened. I'm ready to quit.

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A few years ago I was talking Amphera for about a year it was free. But then I was notified they wasn't about $900 per month. So I elected to go with out it. I do not walk well but rather walk as I do the spend the money for a drug that might work. So I haven't taken Amphera for 6 years now and after reading these comments I wont ever try it again.

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Hi, my name is Brenda and I too have primary progressive MS. Initially when I started Ampyra it seemed to help but as I continued things have worsened with my balance walking and weight gain. I have started to ween myself off medication so I can get back to exercise and feeling better. About to turn 55 next week and have had ms since 2004. Sounds similiar

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I am in the middle of weaning off Fampyra as after an initial good result time, I've been declining, very rapidly. Good stuff is on the horizon though, ,,!

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Hi Pat. I don't have time to read through all these comments so I don't know if anyone has given you the correct answer- you CANNOT just so taking Amypra. It will make you incredibly spastic, as you know. You simply need to scale down off of it. In other words, take 3/4 of a pill 2x for the days, then 1/2, then a quarter... etc. You made need to cut down less than a quarter of a pull at a time, but start taking ur Ampyra again & scale off of it & what you ate going through will stop.
I need to scale off of it 2x a year so it can become effective again. Other than that I have had great success.
I'm sorry your doctor didn't tell you this. It's irritating to me when docs prescribe something they are not educated on.

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Ramona, do you know if their has been any discussion regarding reporting Ampyra to the FDA? With all these people taking it and ending up worse rather than better, it seems it should stop being marketed as a drug to improve walking for patients with MS. In fact, I've never heard of anyone being helped by it, except in the first few weeks. I did, in fact go to the FDA website, and explained what happened to me. I'd encourage anyone to do the same if you've had these problems.

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I am still having problems walking. Problems.....but the hardest effect only lasted a month or so ..after I stopped taking amphera. Amphera, worked well for me, when I was taking it. But the pain I had after stopping the medication was not ever worth restarting it again. I was unable to move from the waist down, even the slightest, without pain. I was unable to move fast. It took so much effort to move, even the slightest bit. Not to mention, PAIN nonstopping. But what happens if one cannot afford it any more? And crash stops??

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