Amprya Stopped Working

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daddysgirl Says:


I 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...numbness in hands...,, I decided today I am off ampyra. No more false hopes, I am so sick of ms....



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1
ampyra Says:

When I was reading your post I was amazed that someone else had the exact same experience with Ampyra that I had. I've had ms for 17 yrs., also been on all of the drugs, now on rebif, and hoped that I found something to help me. I've been on Ampryrs for about a month and like you, I had very high hopes, too high as I have come to find out. In the beginning, it was great. I felt like I was walking normally again. My limp seemed to go away and my balance was much better. On the third day, other people even noticed the improvement. I was excited because I almost stopped taking it after the dizziness and nausea the first two days. Well, like you, my improvement was short-lived and now I think I am even worse than before. I continue to have occasional dizziness and nausea, my limp is back and even more pronounce than before, I am more tired during the day yet have insomnia at night. Oh, and in addition, I am now also being treated for a UTI. I've read other posts where people have said it worked great, then stopped, but then started again. I'm now debating if I should stop taking Ampyra or give it a little more time. As hopeful and optimistic that as I try to be, also hate ms...I it sucks.

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2
michael smith Says:

I am on Avonex now, 2 years going, I have progressive with no relapsing,I am or was excited about Ampyra, in fact tuesday I am going to get on it, now i'm scared,I just took some Gabapen 800 an hour ago,I FEEL FINE....been on Pyclobenzaorine, Amantadine,you name it, i'll come back here and post after I see what happens
Mike.

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Alice Says:

Gosh...reading the 2 posts really hit me. I am a RRMSer for about 4yrs on Rebif and Ampyra for approx 2 months. I thought I saw improvement but as of late I have been much much worse but I have been thinking that it was due to the Mississippi heat of 100+ but you two made me realize that I could be having the side effects of the drug. Hmmm. Something to think about. MS stinks bad and I wish you all the best and God Bless!!!

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4
Verwon Says:

I am very sorry to hear of everyone's experiences with using Ampyra and it is very hard, when you have such medical conditions, to not get your hopes up about some promising new drug or treatment option.

Like any medication there are those that it works well for and others that it doesn't. Such a shame we can't discover something that works for everyone.

https:/­/­www.medschat.com/­wiki/­Ampyra/­

Feel free to post as much as you want and talk about this issue.

If anyone has any questions or is trying to find information on anything, please feel free to just let us know!

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5
michael smith Says:

Well, forget Ampyra,its ok for 2 days, then your worse, i'll continue the Avonex, and the gabapentin,plus buspirone to deal with my jerk problems.

To be honest I now self medicate, I do not trust doctors,I KNOW WHAT WORKS, I mean after all I am the one who has to live with this garbage.
I order everything myself, overseas,FDA approved medicine, my Neurologist prescribed Gabapentin after I already began using it,the script was stale medicine,no good, what I ordered was fine,so....like I said, I am the one dealing with this,the doctors try,but everyone has a different form,they are doing their best.

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6
Alice Says:

Yes the results can be varied for each for us but it does match the package insert in that only 510 patients were on Ampyra in the 2 clinical trials and the responder rates were 34.8% for one trial and 42.9% for the second so that means that less than half of us MSers were going to respond. I think we are the nonresponders. I was so hoping that I would have been one of the few few super responders in the trial that saw greater than 60% increase in walking speed. I am no MD but I have sold pharmaceuticals for 13 years and sold 20+drugs over those years in assorted disease states. I have not seen/read the approval trials for this drug but when I read the package insert I cried, had hope and laughed all at the same time. I cried that maybe there was help and had hope but I actually laughed when I saw the data that the FDA approved the drug. So few patients, so few responders and poor results but it just shows that the market and MSers are so desperate for help and an oral med rather than an injection. BUT there are lots of others on the horizon so we still have hope. Let us not give up!!! Yes we do know our bodies best but I do think we do need physician supervision because there are many drug interactions with things like vitamins that we think are harmless. Stay POSITIVE and God Bless!!!

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7
Alice Says:

Hey Michael....I was rereading your post. Please be careful with ordering your meds over the internet and overseas even if say FDA approved and have the correct pill color, shape and markings. I know one of my medications that I sell is often sold that way and is totally a placebo pill doctored up to look like the branded. I say stick with the pharmacy but if not please just be careful.

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8
Alice Says:

Sorry need to correct my data...in the 2 efficacy clinical trials it was a total of 510 who completed the trials but that included the placebo group so the Ampyra group was 325 who completed the 2 trials.

Verwon do you work for Acorda? I am curious if you can respond. We always sell painting the patient type. Email privately if want as I would love to know how this drug is positioned in the market, as a MSer taking the drug.

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9
michael smith Says:

I cannot seem to respond to individual posts here so i'll just say this out right alice? right?

I am 45 about 7 years ago I started having problems.

I did Garage door service all over the country for 25 years, in fact Dateline NBC lied about me on national tv a few years back.

My father worked at AREA 51 for 22 years, he drllied the holes to drop Nuclear weapons in, and he brought home RADIATION, he had a badge that showed it.

Now I am stuck in Oklahoma because I can't walk more than 20 feet, my family in Smith/Jones, huge, yet I alone in my entire family has this ?

my Dad held me as a baby ?

I have Secondary Proggressive,

I have diagnosed myself,I have 2 nuerologists, an ds a primary, and I had to tell/show them all what I have, in 2 years I have been prescribed over 30 medicines, only 3 so far have worked, and I found them, check out this site! its pretty accurate

http:/­/­www.mult-sclerosis.org/­mstreatments.html

I am not advertising.

I hate drugs,needles,...etc, I can't even watch as my son sticks me, can't watch on tv either.

Anyway, just wanted to vent all that,I love to talk, and write, my e-mail is mike653667 at msn if anyone wants to talk, can't do much more......

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10
Roy Says:

Hi all. Has anybody heard of 'The Liberation Treatment' ? It was recently reported on Canadian news and may be encouraging information. The treatment was initially developed in Italy and is currently undergoing more human trials. I wonder why it has not received more coverage in the U.S.?

I suggest that everyone review this 8 minute video: http:/­/­www.ctv.ca/­CTVNews/­WFive/­20091120/­W5_liberation_091121/­

"Amid the centuries-old castles of the ancient city of Ferrara is a doctor who has come upon an entirely new idea about how to treat multiple sclerosis, one that may profoundly change the lives of patients.

Dr. Paolo Zamboni, a former vascular surgeon and professor at the University of Ferrara in northern Italy, began asking questions about the debilitating condition a decade ago, when his wife Elena, now 51, was diagnosed with MS.

Watching his wife Elena struggle with the fatigue, muscle weakness and visual problems of MS led Zamboni to begin an intense personal search for the cause of her disease. He found that scientists who had studied the brains of MS patients had noticed higher levels of iron in their brain, not accounted for by age. The iron deposits had a unique pattern, often forming in the core of the brain, clustered around the veins that normally drain blood from the head. No one had ever fully explained this phenomenon, considering the excess iron a toxic byproduct of the MS itself.

Dr. Zamboni wondered if the iron came from blood improperly collecting in the brain. Using Doppler ultrasound, he began examining the necks of MS patients and made an extraordinary finding. Almost 100 per cent of the patients had a narrowing, twisting or outright blockage of the veins that are supposed to flush blood from the brain. He then checked these veins in healthy people, and found none of these malformations. Nor did he find these blockages in those with other neurological conditions.

...

Taking a page from standard angiography, in which doctors use balloons to open up blocked arteries that feed blood from the heart, he enlisted the help of vascular surgeon Dr. R. Galeotti, also at the University of Ferrara and Santa Anna Hospital. Three years ago, the team began a study in which they treated 65 MS patients to see if endovascular surgery would restore flow in these vessels and lessen MS symptoms.

The study detailing those results will be published in the Journal of Vascular Surgery on Nov. 24. But preliminary results, already released, show patients had a decrease in the number of new MS attacks, a big reduction in the number of brain lesions that define MS, and improved quality of life. The only time symptoms returned for the patients was when the veins re-narrowed.

...

One of those patients was Buffalo resident Kevin Lipp. Lipp had MS for over a decade, and as part of the study, discovered he had five blocked veins in his neck. After undergoing the Liberation Treatment 10 months ago, he says he hasn't had a single new MS attack.

Zamboni emphasizes that the Liberation Treatment does not make people in wheelchairs walk again. Rather, it seems to stop the development of further MS attacks, and in some cases, improves movement and decreases the debilitating fatigue that are the hallmarks of MS.

The foundation that has sponsored Zamboni's research, the Hilarescere Foundation, also urges cautious restraint.

We can't give the illusion to patients that this is a guaranteed treatment and it is easy. This is not right. And we have never done this, says Hilarescere President Fabio Roversi-Monaco. We don't say this is a cure for M.S. We only say that research is advancing, and there is encouraging data but we are waiting for more conclusions.

Dr. Zivadinov in Buffalo is now starting a new study, recruiting 1,600 adults and 100 children, half of them MS patients. He plans to use ultrasound and MRI scans to confirm if those with MS also have CCSVI and if their family members have the abnormalities too.

Prof. Mark Haake, a neuro-imaging scientist at McMaster University and Wayne State University in Detroit is also intrigued by Zamboni's findings. He has long been seeing iron deposits in the brains of MS patients using a specialized MRI analysis called SWI - specific weighted imaging. When he saw Zamboni's initial publications, he immediately contacted the Italian doctor and began collaborating."

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11
Alice Says:

ROY.... yes have heard some of that. I don't know if you are familiar with MS World an online newsletter that comes from the National MS Society that sends educational information and it also has webcasts and podcasts that can listen to. Attached is the link, hope it works, to the one they have discussing the CCSVI and MS http:/­/­www.nationalmssociety.org/­multimedia-library/­ms-learn-online/­index.aspx?utm_source=MSWorld+Express&utm_campaign=767f88d6fa-MSWorldNewsletterAugust23_2010&utm_medium=email ...

MIKE...get prescription drug link and I am on so many of those myself. Wow what a life story you have!!! I will email you soon when I have some time to share my story/battle as well. Another site that I go to allows you to private message but this does not??? Oh well, I will get back with you.

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12
Roy Says:

Thank you Alice - I was not aware of the work they've been doing on our own soil for this :)

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13
michael smith Says:

yeah, Stealth aircraft, rocket plant explosian,I could tell some real stories,wrong place at wrong time,maybe, I made alot of money before this thing hit me, anyway, I know I can't do cortico-steroids all the time, but a mix of those and gabapentin (sp?) seems to be working for the last few weeks,I tried Ampyra and started throwing up right away,so....Avonex does not make me sick at at,been bit by scorpions and black widows,nothing at all so i'm not sure why that made me sick.

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michael smith Says:

I read the whole story about the liberation treatment what I got out of it is it may work with some forms of MS, but we don't all have our own physicist(sp?) on call 24 hours a day to take care of us, and it doesn't sound like a one treatment fixes all, but then again at least someone is trying to make progress, if it does work, then treatment should begin on more of us,in 20 years if the FDA EVER APPROVES IT, thats a joke.
I have 2 years of college research training (so that makes me an expert? yeah...) I look at everything very close. sorry I am very sarcastic.

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michael smith Says:

Well, I have something going on, Biogen-Idec says they have never heard of this, my neuro's have no clue either,and won't suggest a course of action,so I guess I need to find a new Doctor.

About a year ago 8 hours after my Avonex shot My legs would not work,I was paralyzed for about 7 hours,6 months ago it happened again,but I was immobile for only an hour,I week ago it lasted a half hour, this week 2 days later and it lasted a day.

Since my MD'S won't suggest anything, or give me guidence,I seem to have no choice but to discontinue the Avonex, I don't have relapses,or is that what these are? any one have a clue? Any advice will be considered.

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16
Kathryn Says:

I am on nothing but LDN which worked wonders for me and actually still does and started Ampyra in May and it is now almost September - I was limping and using a cane/rollator but could still get around fairly decently and in the past few months, I can barely stand up and literally cannot be without a rollator or wheelchair and I think it is the Ampyra which worked pretty well or seemed to the first few months although I was not doing hand springs by any means but lost the spasms and muscle lock but those are back now too and it seems to be interfering with the good stuff my LDN was doing - I am thinking of just quitting taking Ampyra and especially after everything I read, seems everyone else here is having the same effects I am getting - initially seems good and then feels like I am getting worse and worse. I have been on every disease modifier and my body has rejected them all hard but LDN helps most of the worse symptoms so until another non-injectionable MS drug comes out, I am going to stick with the LDN and go off the Ampyra because it is amazing how much worse I seem to have gotten. I know a lof of folks have already written much the same as I have, but sure would like to know if anyone has stopped taking it, like I am going to?

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17
jennsmom6087 Says:

i started ampyra in october and i love it. my family has noticed how much better i walk. i can walk around the grocery store now with my husband and not get exhausted. granted by the time we get to the front to a cashier then i go and sit down. but i am excited that i can do that and walk an hour thru the store!

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18
Kay V Says:

I am 73 years old and have had MS (a supposedly mild case) since 1979. My relapsing-remitting MS has been secondary-progressive MS since at least 1995 when I began using a cane. Have since moved to a rollator and a motorized wheelchair. I began Ampyra a month ago; no side effects and I can stand for a few seconds longer when I get dressed in the morning. I'm wondering how long one must take it before being able to walk.

I'm not great on chatting on the Internet but I am delighted to meet someone with sec-prog MS. Thanks.

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19
Yiskah Says:

Hi Kathryn (and everyone). Thanks for your post. I started LDN 1/1/11, after weaning my baby. I have had MS since 1996 and only ever did alternative methods to treat it-- acupuncture for years, and now regular homeopathy and LDN. I have just been approved for Ampyra, and am now waiting for the application for financial assistence, but I do not know if this is right for me! I will keep reading and go w/ my gut instinct!

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20
Erin Says:

Hi Yiskah, I was dx a year after u in '97. How's your walking ability? Ampyra is worth to try. I will keep on taking it. I definitely hope Ampyra will do magic to all of us.


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