Going Off Ampryra After 3 Months

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Dee Says:


I got off ampyra after taking for 3 months because I felt it did not help my walking and caused other problems. I was not happy putting up with insomnia but was willing to tolerate if it was a tradeoff with walking. Since being off the medicine for one week my walking is terrible and balance worse than when I started. Has anyone else noticed problems when they stopped taking medicine after a 3 month period. I still feel the ampyra did not help but do not understand why I am worse off now than when I started the med.



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1
NoAmpyra4Me Says:

Sounds like we had the same results. I tried Ampyra for three months, during which time my walking actually seemed to slow a bit. I stopped using it when I got a nasty UTI, which gave me symptoms similar to an MS exacerbation. It took two rounds of antibiotics to finally get rid of the UTI. After laying off Ampyra for a month, I tried it again (ever hopeful), and soon after taking the first pill I got a headache (which is rare), felt woozy, and had body aches the rest of the day. I'm through with the stuff. It didn't work for me. My walking is worse now than before I started taking the drug.

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Erin Says:

I am sorry to hear that Ampyra did not work for u both. It is a great challenge dealing with MS. At the same time frustrating on a lot of level. I am still on it, even though it is not perfect. It could be better. I wish us all a better quality of life. take care....

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Laurel Says:

I agree with you - my walking is worse too and I'm afraid it won't come back. I stopped Apmyra two weeks ago and am praying that my walking returns to the way it was before I started.

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Pat Says:

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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Laurel Says:

I got so frustrated with terrible foot drag after having stopped the Ampyra in December that I finally went back on it 2 weeks ago. I am having positive results. This time I am careful to never forget to take it and to always take it at exactly 12 hour intervals. So far so good. I even walk sometimes without the cane.

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Jan Says:

Hi Laurel..I am so pleased to read your return to Ampyra has been positive this time, albeit having been a poor first try with worsening effect, then a terrible foot drag after stopping. Hope your staying right on 12 hour intervals was the key to getting an improvement and now even walking no cane, I gather. Good for you having figured a way to improve dosing interval.

I am in Canada where it is marketed as Fampyra.

I started 10 days ago 2xpd 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"), I 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. After a sudden seeming miraculous improvement yesterday, now it is not just my right side but my left too and that has me really worried.

After 12 years and a really slow decline, Ampyra seems to have triggered a set back. But you give me hope. I recall and believe my MS was triggered to begin with by a series of Hepatitis shots my doctor recommended to protect my kidneys and many others also feel those shots triggered their MS. I have Primary Progressive, am male aged 61 now. It seems the body must find a way to channel the Ampyra and the rceptor needs a consistent flow of potasium blocke or it gets "hungry" and the neaves worsen?

I see my Neuro Tuesday to fill Insurance forms for Fampyra as I am on the free 4 week trial supplied by pharma manufacturer.

May I ask if you are you still on Ampyra and doing better than before taking it? Also, when you did stop, did you stop altgether or gradually?

Your post of returning and finding improvement with a sense that being very diligent at 12 hour intervals is so good to have read.

Best of luck

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Laurel Druce Says:

Hi Jan-Michael,

I am no longer able to keep to the full 12 hour interval. I sometimes need to take it after only 10 hours. And if I oversleep and 14 hours have passed, it takes awhile for my legs to work. It's not perfect, but I'm afraid to stop again. I stopped cold turkey. My doctor had said it was ok to do that. I'm anxiously awaiting FDA approval of Biogen BG-12. I don't know why everyone gets worse after first having improvement on Ampyra. It's a time release so that makes no sense to me. Some people have a better experience with the compounding formula. Good luck to you.

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8
Pat Says:

I had the same experience with both insomnia and with my walking significantly worse after taking Ampyra for 2 months (also horrible stomach pains which stopped after stopping Ampyra). After 6 months after stopping Ampyra, my walking continues to be bad.
My MS had been stable according to MRIs for several years, and my walking largely stable with very slow decline.
I am interested in whether those whose walking got worse after taking Ampyra had been largely stable for a period of years before you took Ampyra.
Good luck to us all.

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9
Jan-Michael Says:

.Thks Laurel, particularly that for you now, a 10 hour interval is sometimes better. And that if overslept, takes awhile to get moving!

I think the timing is something we each need to find. The 12 hr interval I find has really messed up my routines with needing to take pill only 2 hrs after a meal and not eating for 1 Hr after. the Ampyra.

Best to you and so glad for these forums, as I find even better info here than MS Clinics or Neurologists.FKABU

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Jan-Michael Says:

The last letters on my recent post were nothing...just an error as I was typing the code to post so do not try to figure if the 5 letters mean anything. They are a code for this site

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Laurel Druce Says:

Awww, and here I was thinking it was a secret code with a pot of gold at the end of the trail!

We have to have a sense of humor, right? That's what gets us through the day.

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Adrianna Says:

Started Fampyra Jan. 8 (49 days) and have not seen positive effects-balance is much worse. Don't have any other serious side effects-the only one is real bad balance and sometimes some double vision. I use a cane, do not go out alone and now walk very carefully IN the house after having fallen-thank goodness not hurt. After how long does one see progress, if of course they see?

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13
Deanne Says:

Is there a problem going off Ampyra "cold turkey" as my MD suggested, after having been on it for close to four years?

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Jan Michael Says:

Deanne, I stopped "cold turkey" as I was suddenly suffering bad falls and worse eye problems after initial good 3 months. I suppose it depends why you are coming off if you took 4 years. I always feel as patients we are best judge but good to get others experiences. For me I found I had to have 2 x daily or NOT at all and there was no weaning off which I understood would make brain nerves confused! I think cold turkey is best!

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joyj Says:

how are you now on or off ampyra

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16
Mike Says:

Stopped taking Ampyra after insurance would no longer cover. It seemed to help me a little with my balance. After stopping the drug my MS was much much worse then before I was ever on this drug. it has been 3 months and still the same, my doctor told me my MS just seems worse because I am no longer taking Ampyra, the doctors always stick up with the drug companies. its sad but true, its always about the money! this drug cost 26,000 a year!! what a joke!

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Mike Says:
via mobile

I was yanked off by insurance cost. It had a horrible effect on my walking. 30 days later I had a massive spasm from my hips down to my toes. I've been waiting to see other results and now I know it is the Ampyra. It has been five years and I have been in a wheelchair since. Major pain and spasticity ever since then. This drug should be pulled off the market. My MS did not progress at all since then. No one could understand why I progressed so rapidly. I am putting together like stories to publish; if you have experienced the same type of results please respond below. Thank you and good luck.

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18
Regina Says:

I always felt that my walk baseline was lower after stopping Ampyra than when is started. I have stopped now because I believe, even as my neuro does not, that it has been the cause of my almost constant uti. My walking i dreadful now, I can't walk without hiking sticks, but I am hoping that it will eventually get better. I am on rituxan, and believe it is doing me good, but for the uti.

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Scotchrocks Says:
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I wonder if the Ampyra was stopping your symptoms from getting worse while you were taking it.

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schroederra Says:

I am now off it for 2 months. It has always been tough to get back to my baseline. Also at least part of my MS is now SP, my neuro says it doesn't necessarily go RR-SP all at once. I'm on Rituxan, just had the first half of my third dose, and so enjoying the benefits of 1000mg steroids. I'm giving this a 9 months trial with my neuro's skeptical approval, I connect Ampyra with my uti which have been w/o ampyra setting me back. Will go back to Ampyra because it gave me exactly about 25%improvement in walking, and I believe it lifts my mood and helps me thing- if i some to believe it has nothing to do with uti. MS 1st attack 1981, tysabri in 2011, copaxone in 2015, Rituxan in 2016. My neuro is great, he likes drugs but wil let me try anything within reason.

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