FDA Approves Ampyra fampridine-SR

A board to discuss future MS therapies in early stage (Phase I or II) trials.

Postby SCGirl » Tue Jun 01, 2010 5:16 am

Leetz,
How long before you started noticing improvements?
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RE AMPYRA IN CANADA

Postby seeva » Fri Jun 04, 2010 12:08 am

HELLO any one know that the drug ampyra avilable in CANADA. my friend from canada told me that fampridine-sr now in CANADA. Any one confirm
this please.
regards
seeva :roll:
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Postby Brooke » Fri Jun 11, 2010 5:26 pm

Hello all,
I live in the US so it is hard for me to answer if Ampyra is available in Canada or elsewhere. I recently got a prescription from my doctor, and after a month, it has been processed, will cost me $40 a month and will be shipped to me from a specialty pharmacy.
I am very excited to try this. Someone previously mentioned the segment on The Today Show, I saw that and really loved the results the gal has gotten from this. But she was on the generic first (Fampridine) and it worked for her too.
I was on Fampridine (made from a compound pharmacy) for about 2 months, and it did nothing for me.
Now that I am ready to try the Ampyra, I am curious if anyone else has tried the generic, and then Ampyra, and what advice they can give me? Did the generic not work and then Ampyra works? (That is what I would LOVE to hear :)
Thank you so much!
God Bless!!
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Ampyra

Postby KDGO » Mon Jun 28, 2010 1:28 pm

I was on Ampyra for 3 months and just stopped taking it last week.
I found no improvement at all. My mobility was been challenged this year and was hopeful that this would help.
On to the next.
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Postby KSA » Tue Jul 06, 2010 1:32 pm

I'm in Canada, have PPMS, and I've been on 4-AP for 9 months. I walk to work, the same route every day, so I'm able to notice differences immediately. The first day I took 4-AP, I had a splitting headache. The second day I took it, I was racing to make lights, rather than looking for a chance to stop and rest. Pain from spacticity in one leg that I'd had for a year disappeared.

Now, 9 months later, I can tell when the 4-AP has lost some of its effectiveness, usually about a month after I get it from the compounding pharmacy. I'm looking forward to trying Ampyra to see if it is more stable, and delivers better results. I don't know whether it has been approved in Canada yet.
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Ampyra Day 26

Postby anneanne » Mon Jul 12, 2010 3:22 am

Hi! Well, I am waiting for my doppler of neck veins in Aug. In the meantime, I started Ampyra 26 days ago. I've skipped maybe 5 doses since then. From reading up on Ampyra this seems like the most toxic med yet, but I must attest to its efficacy!!! I have just survived a week of a massive heat wave and was functional almost every moment for the first time on a hot day in about 4-5 years. In fact, I literally was able to drive a 5 hour round trip for the first time in 5 years this past weekend.

I am wondering what vitamins/nutrients I can use to counteract the "potassium blocker" - nervous about long term impact. But grateful to be able to play outside with my kids for the first time since they were 4 and 9 (they are now 9 and 13).

Curious about others' experience.
Thanks!
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walking drug

Postby reneelucia » Sat Jul 24, 2010 9:40 pm

I heard a neurologist from Bend speak about this a little recently. She said it only works for 50% of people and only a 20% improvement in walking. However, she calls it a "feel good drug"
I may begin this drug. The neurologist I heard talking about it said that most insurance companies are denying so that she doesn't have any experience with it yet. My neuro hasn't prescribed because of all the hassle involved with special pharmacies, etc. My understanding is that it improves the ability of the brain to send/recieve signals more quickly. The neurologist that gave the presentation seemed to think that if it doesn't work after 2 weeks...its not going to work. So I'm kind of waiting to see what others are doing as well.
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Postby anneanne » Sun Jul 25, 2010 8:56 pm

Hi Reneelucia,

Thanks for your words.

Ok, so, i did well for the first three weeks (as I describe in my previous post). Fourth and Fifth week I found myself still very able to walk, but insomnia started to kick in, and so did brain fog.

It was refreshing to be in mid-summer and be able to walk and stay up late! However, I found that for the 4th and 5th week my mind became mush. I am involved in several major projects that demand excellent executive functioning and I could not motivate myself to act on anything that needed thought.

Maybe this is unique to me because many of my MS lesions are on my brain, and very few on my spine, so it makes some sense that a "potassium channel blocker" is a whole body experience and my brain was having, after 3 physically healthy weeks, a bad mental reaction. It felt like, you know, if you ever drank or smoke too much and you are sitting in a circle with friends partying and no one wants to move to let the cat in, or put out the fire, or even reach across the hallway and get the potatoe chips.... though we are all thinking of it (this is a memory from over 25 years ago I think!)

I do recall, and must confirm this with my neuro, that when he and I first discussed ampyra I got the impression he thought this would be a "take as needed" med. When the pharmacy finally connected with me the pharmacist said he was surprised I was told that and instead the pharmacist told me I should take it every 12 hours and that it had to gather in my system before I'd really see results.

After my 2 wks of brain mush, thankfully found myself describing this to my little sister, and realized that I wasn't getting better, so didn't take med that night, nor next morning. Within 18 hours my brain started to clear again, which makes me confused about how best to take this.

Just sharing my experience. Really looking forward to Aug.

Later :)
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4-AP

Postby UWE59 » Wed Aug 04, 2010 3:43 pm

Hi,
I will start tomorrow with up to 4x5mg/day 4-AP.
Hope it works for me.
Ampyra will be available in Germany in March 2011.
Kind regards UWE
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Ampyra...

Postby khehran » Tue Aug 17, 2010 7:12 pm

Hi,

I was on 4-Aminopyridine in 1992, later to be named Fampridine, and then Ampyra in the States; it was absolutely incredible, as it allowed me to walk unassisted for blocks on end! This was after I was in a wheelchair for a year and a half! I cannot wait until it is finally available in Canada.
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Postby UWE59 » Wed Aug 18, 2010 6:47 am

Hi khehran,
you took which dose of 4-AP (Fampridine)?
AMPYRA was better than 4-AP?
Did you feel immediate responce?
Some weeks ago I started a 4 days trial with 3x5 mg 4-AP without results.
Today I restart with 10 mg 4-AP at once with tingling feelings in my face after 1 hour, no improvement in walking.
I had a "push-up" feeling in my mind which unfortunately don`t correspondent with my body feeling.
Kind regards UWE
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Ampyra...

Postby khehran » Wed Aug 18, 2010 7:08 am

Hi there,

it has been over 18 years since I took 4-Aminopyridine for symptoms of MS, and I do not recall which dose I was on - sorry about that. I only took it for a short time, about 3 weeks or so. It's ironic that one of the developers of this drug is Canadian, and the drug is STILL not available for use here! Doesn't make any sense.

Good luck!

By the way, I get acupuncture treatments for the MS, and they seem to help by giving me energy - something which we tend to lack!
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Postby khehran » Sat Nov 27, 2010 4:10 pm

Hi,

I'm in Canada, and I am wondering who prescribed 4-AP to you? A neurologist or another doctor? I took it nearly 19 years ago, and I noticed that it did help me to walk futher. I would like to try it again. Thanks for your response!

Nina
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Postby Bear2 » Sat Nov 27, 2010 4:54 pm

Nina,

My neuro precribed it and I got it from a local compounding pham. I now take Ampyra which is cheaper through my insurance. Kind of crazy since the Amprya is $1100+ per month and the 4ap is $125. The insurance covers Ampyra with a copay of $20 and will not pay for 4ap since it is not an approved drug.

crazy system!

Try http://www.patientslikeme.com. They have many sources for 4ap.

Jim


http://www.trianglecompounding.com/index.html
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Ampyra...

Postby khehran » Sat Nov 27, 2010 7:57 pm

Hi Jim,

I spoke of Ampyra to my neurologist about 3 weeks ago, and he more or less scoffed in my face! He said there wasn't enough evidence to prove it was efficacious, and he didn't think it was worth trying! I told him that I was on it a few years ago, and I did notice that it helped me. I was frustrated, and I felt as if I did not know where to turn. I would like to try it again, to see if I will be able to walk further once more.

Thanks for your help!

Nina

P.S. Which province do you live in? I'm in Alberta.
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