Would like to hear from people using Ampyra

Dalfampridine, or Ampyra, is a potassium channel blocker that is shown to improve visual function, motor skills and relieve fatigue in MS patients.

Would like to hear from people using Ampyra

Postby suze » Fri Sep 07, 2012 8:24 pm

Reply to topic in 'general' section:

I have been using it for about 2 months. It's definitely not a wonder drug. I'm really not sure if I am walking any better - maybe marginally. As that research from squiffy stated, I think I would get more or equal benefit from physio.
I think I might go off it for awhile and compare.
When you have a progressive condition like MS, you get in the habit of just coping and enjoying the good things and not spending too much time pondering about what you can and can't do - at least that's what I do!
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Re: Would like to hear from people using Ampyra

Postby gymbuff » Sat Sep 08, 2012 1:14 am

Hi All

My third month of Fampyra will finish next week and I intend to take a break and monitor the difference. I did notice an improvement after about a week not in speed but in endurance/stamina. I will post again in a few weeks after I cease taking it.
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Re: Would like to hear from people using Ampyra

Postby CureOrBust » Sat Sep 08, 2012 7:27 pm

I used a compounded version years ago and recently tried a month of the Ampyra product. The effects I feel are very subtle, but the results on how much less disabled I feel, are very significant.
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Been on it for well over a year

Postby mselinida » Tue Jan 29, 2013 10:27 am

I got on it a couple of months after it was approved here in the states, so it may be closer to 2 years.
It's not a wonder drug but I definitely notice it when I'm not on it.
I can even feel it when each individual dosage is wearing off.
But it's not making me miraculously walk.
It's better than nothing.
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Re: Would like to hear from people using Ampyra

Postby questor » Wed Jan 30, 2013 9:59 am

I'm just starting my third month, not a wonder drug as others have said, but I've definitely noticed an increase in leg strength while using it. I tried stopping for a few days to see if I could notice a difference, and the difference was VERY noticeable, my walking was more difficult and clumsy and I was more reliant on my walking stick. With using Ampyra, I can walk comfortably for longer distances, and during my regular spa exercise program, I can comfortably press more weight with more repetitions using my legs.

I still use a walking stick when I walk, primarily for balance, but my dog appreciates the longer dog walk he gets now-a-days.

Subjective conclusions about efficacy are problematic, but my subjective guess would be I have experienced a 25-30% improvement in leg strength and walking ability. Too bad that the drug does nothing to slow or alter the course of MS progression.

--Tracy
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Re: Would like to hear from people using Ampyra

Postby pmouse » Thu Mar 07, 2013 12:49 am

I am on Fampira now for 5 weeks and I noticed next things:
- walking speed improved - 7,.. m in 3,8 s
- in 2 min I walked distance 187 metres
- I can more easy stand up from any position
- I am less tired - I have more energy
- my stability is better
- my nystazgmus is the same as before - I expected less nystagmus
- my urin urgency improved so I dont have to go to toilet at night
-
Anyway fampira is giving me an energy to be alive again and helps me coping with daily life.

But I was wondering is trere any analyse about the weight of person regarding Fampira dosge. I am taking 10 mg twice a day, buy I forgot few times and it was the same.
II have 63 kg and I would like to take it just in the morning.

Does anybody knows anything about that?

Regards

Robert
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Re: Would like to hear from people using Ampyra

Postby questor » Thu Mar 07, 2013 8:41 am

Another benefit for me is that night-time spasticity in the lower legs is no longer a problem. This used to be a nightly problem for me, but now occurs only infrequently, maybe once or twice a month.
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Re: Would like to hear from people using Ampyra

Postby heathoo » Fri Mar 15, 2013 1:06 pm

I have been on Ampyra since January 19th. Here are the things I have noticed:

I can walk longer, faster and farther than I could before
I can walk up and down stairs without hanging on to the wall
I don't experience "restless leg syndrome" as often as I used to at night (too much alcohol or caffeine will still cause it)
I feel clearer in my thinking and less anxious

There are probably other benefits but those are the ones that stand out.

I have not experienced any side effects at all in the 2 months I have been on it. I take it every 12 hours at 8:00 am and 8:00 pm. I have skipped a dose at night because I forgot to take it, and I forgot to take it in the morning once. I could definitely tell that I hadn't taken it, but it wasn't harmful. I just reverted back to where I was before I started on ampyra until I took my next dose.

I didn't take it the first month I had the prescription because I was scared of side effects and didn't want to ruin my holidays, but I take it faithfully now. I also take Copaxone.

My doctor is talking about having me take tysabri but that one scares me because of the possible PML side effect. The jury is still out on that one.

I was diagnosed with MS in 1999 and am now 47 years old and still do most of the things I love to do. I can't run any more, and 5-mile walks are out of the questions, but I can still ride my bike, go shopping, take my dog for a walk and enjoy life. Hopefully Ampyra will help me remain able to do those things a little longer.

Best wishes,

Heather
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Re: Would like to hear from people using Ampyra

Postby David1949 » Wed Mar 27, 2013 9:15 am

Does anyone know what the approximate cost of Amprya is?
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Re: Would like to hear from people using Ampyra

Postby DougL » Wed Mar 27, 2013 9:18 am

David1949 wrote:Does anyone know what the approximate cost of Amprya is?

In Canada - just at doc last week. first month is free (hey isn't that how cocaine dealers get you hooked too).

after that, i think they said the cost was between $500 and $600 a month.
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Re: Would like to hear from people using Ampyra

Postby CureOrBust » Thu Mar 28, 2013 12:35 am

Same in Australia. They give you a trial month for free, but it was only through 1 online pharmacy.
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Re: Would like to hear from people using Ampyra

Postby LSITC » Thu Mar 28, 2013 2:53 am

In London Uk. Using fampyra for 15 months. Legs feel stronger and def more energy. Have been getting it free but trials now stopped here so am waiting to find out cost :((((
But was diagnosed with Crohn's four months ago and am worried this is a side effect of fampyra. It does say it can cause upset stomach - just wondering if anyone else having similar problems. My neuro suggested stopping for a few weeks to see but feel so much better on it don't want to.
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Re: Would like to hear from people using Ampyra

Postby questor » Sat Sep 20, 2014 10:02 am

I had a mild focal seizure while walking my dog earlier this month. I had been on half-dose Ampyra for about a year because of increased seizure risk related to my age (58+) and mild kidney disease. My doctor said the seizure was most certainly a side-effect of the Ampyra. So, I've had to stop it.

Boy, do I miss the walking benefit.
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Re: Would like to hear from people using Ampyra

Postby CureOrBust » Sat Sep 20, 2014 5:37 pm

questor wrote:...I had been on half-dose Ampyra for about a year ...
Did you speak to the makers of the product? I think there is a physical structure to the tablet to control the timed release of 4-AP, and cutting it in two would seriously affect it. although, that structure may simply be there to protect the 4-AP from the atmosphere.

questor wrote:I had been on half-dose Ampyra for about a year because of increased seizure risk related to my age (58+) and mild kidney disease. My doctor said the seizure was most certainly a side-effect of the Ampyra. So, I've had to stop it.

Boy, do I miss the walking benefit.
I used to get compounded 4-AP in smaller 5mg doses, so that I could control when and how much "walking assistance" I could gain. I am thinking of going back, as taking half the dose before bed seems like almost a waste (by waste I mean subjecting my body to a poison for a little benefit when I wake up). Maybe you should look into the possibility of getting 2.5mg (or even less) tablets compounded, and only take them when you foresee they would be of benefit. ie if you plan to stay at home, skip them.

If you do go with this idea, don't make the same mistake I did, in that the pharmacy I have (they compound lots of other stuff for MS as well), do not appreciate the importance of the method of storage of 4-AP. I have read it is very sensitive to being exposed to the environment. I think I noticed their product get less and less effective over time. :?
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Re: Would like to hear from people using Ampyra

Postby questor » Sat Sep 20, 2014 10:30 pm

CureOrBust wrote:Did you speak to the makers of the product? I think there is a physical structure to the tablet to control the timed release of 4-AP, and cutting it in two would seriously affect it.

You're right, cutting the tablet in half would have been a problem. I meant that I was taking only one tablet a day for about a year, the standard full-dose is two tabs daily, one each taken 12 hours apart. I was told to take only one daily after it became apparent my kidneys weren't working at 100%. Now, after the "otherworldy" focal seizure, I'm done. I don't want to risk having another one.
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Stent in left and right IJVs
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