Any Ampyra/dalfampridine user comments?
 

So who here uses it? How long did it take to notice improvements? Any sides experienced?
And if it improves endurance by making a jumper for conduction, does it regenerate nerves over time?
I'll likely get a script for this in 1 week if I desire (I do) and wondering what to expect.
I exercise & consume 50-100 grams of protein daily, inject 100mg testosterone cypionate weekly.
Thanks in advance.

Hi Eddie,
There are many people on the older version 4-AP immediate release. The new one, Ampryra SR, was to be available on March 12.

You have to have forms filled out, your Neurologist must fax all the paperwork to Acorda, who will give you a case manager, case number, etc.. :rolleyes:

Then they go on from there. I heard the co-pay can be $300.00 a month if you don't get assistance for not being able to pay that amount.

I am not sure how long it takes with private ins. They did not expect to have so many people waiting for this drug to come out. I assume they will make a fortune in a few years if this drug helps the MS population.

If you get this drug, before it is delivered or picked up, be sure to ask what the co-pay will be. Just information I heard from others who have sent in their prescription to be filled.

One person who did start it, said he got insomnia from it, but that is just hearsay, IMO.

I took a compounding pharmacy tablet of SR 4-AP (cost full price of 31.00 a month). No real side effects but didn't help this PPMSer in a chair either. It (to my knowledge)doesn't regenerate or fix anything, works (if it does) when you're on it, doesn't when you go off it. Efficiency depends on person. Good luck. Keep us informed!!

Hi Eddie, I've been the phase III/extended study for 1 1/2 years. I take it every 12 hrs - it's not a med that stays in your system. It has helped me with foot drop which in turn makes walking easier. As for strength I can't tell as I have always exercised to the best of my ability therefore kept up my muscles/leg strength.
I don't think it regenerates nerves-but I don't know. I don't seem to need it so much before the 12 hrs is up... I used to recognize the need at around 8-9 hrs ...maybe it just doesn't help as much as in the beginning (?) After awhile I think I get used to a new normal-as with Tysabri my QOL is better and that may be the same with Ampyra (Fampridine)
Good luck and hope it helps:)
Linda

I have filled out the paperwork and am waiting to hear....neuro told me that I should take it in the morning and then around 2 or 3 pm, as I don't need it at night, since I don't do anything but sleep:rolleyes:
He told me it just plugs the holes where potassium leeches out of the damaged nerves, thus enabling the nerves to conduct a bit better.
Also told me it normally costs people about $40/mo. when they get assistance. From whom, I don't know.
I'll let you know how I do when I finally get it. It sure would be nice to be able to pick up that lazy foot of mine...

Thankyou so much for all your replies so far.
I will reduce Testosterone Cypionate 20mg for 80mg total every 7 days when I start Ampyra.
100mg is high putting my level near 1000 but it helped increase strength. Nothing for numbness increasing.

I saw a new neuro today. We got the paperwork rolling :)

An E-Mail Received From a Friend,,,
I thought you might be interested in this report from a friend on AMPYRA!!!

SOME SIDE EFFECTS WITH AMPYRA:
Insomnia, dizziness, headache, nausea, weakness, back pain, problems with balance, MS relapse, burning, tingling, or itching of skin, irritation in your nose or throat, constipation, indigestion, pain in your throat. UTI
GRRRRRRRRRRRRRRR I HAVE MOST OF THESE.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Is it working? If not, drop it like a hot potato.

So sorry, sweety, love, sally
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


AT TIMES I THINK THINGS ARE GETTING BETTER LIKE FOOT DROP, WEAKNESS ON LEFT SIDE, HOWEVER OTHER SYMPTOMS I ALREADY HAVE AND IT SEEMS TO ESCALATE THEM. I NORMALLY TAKE 2, 12 HRS APART SO I AM JUST TAKING ONE A DAY NOW TIL I SEE IF IT BUILDS UP IN MY SYSTEM.

IT IS THE ONLY THING THAT HAS COME OUT TO SEE IF IT HELPS WITH MY BALANCE. HAD AN APPT. WITH MY PCP TODAY AND WAS GOING TO ASK HIM BUT THEY HAD TO RESCHEDULE THAT APPT.

MY NEURO IN ALBUQUERQUE IS THE ONE THAT SAID IF I WANTED TO TRY IT MAYBE IT WILL HELP. GUESS I NEED TO CALL HIM AND LET HIM KNOW WHAT IS GOING ON. IT WAS MEANT TO HELP PEOPLE WITH MS TO BE ABLE TO WALK FASTER IT HAS HELPED SOME OTHERS HAVE NOT. I WAS HOPING IT WOULD HELP BUT DON'T THINK IT WILL. HOPE YOU ARE DOING WELL.

TAKE CARE DEAR
LOVE AND PRAYERS,

Insomnia, dizziness, headache, nausea, weakness, back pain, problems with balance, MS relapse, burning, tingling, or itching of skin, irritation in your nose or throat, constipation, indigestion, pain in your throat. UTI


No side effects when I took compounded 4-AP but noticed when I brushed and spit some blood in sink I thought was coming out of throat. Not a lot, not irritating (didn't know it was there until I spit) and as it didn't seem to help at all, I stopped after trying a month +. Very slight indigestion.

No side effects for me - I'm sure that I was hoping for more, but it helps. I move faster and get around the office without the cane (my boss has noticed a change, my wife does not)

I am of the opinion that all medications can have side effects, which they must post, even if they are rare.
I am sure that many of these side effects are possible but unlikely in the majority of patients.


I called to find out the status of my request-the neuro's office never sent it in:mad::mad: they apologized profusely and faxed it in immediately. I swear...are the patients running things? I should get paid accordingly.

Thanks. I called them today to ask if they received my paperwork from Dr's appointment last week. They said no. I asked if backlogged, he said no..was up to date as of yesterdays paperwork. Its a Friday so Monday awaits. Why do weekends always come at the wrong time? heh

edit - Deb you posted that as I was typing this. Yes I feel your pain.

But these are the things I would take this med to get rid of..Geesh.

I saw my neuro. yesterday. We talked about Ampyra and decided that I'll give it a try.

The paperwork has begun. I'll get the blood/kidney test done next week.

So we shall see.

Cheers,

Niko:cool:

Reason why Acorda didnt have my paperwork was because i didnt see I had to sign/date form 2x! Faxed it yesterday. Let the paperwork wheels begin.

Ampyra works GREAT for me
 

Have been on it almost two weeks. probably 50% improvement in walking speed and duration. amazing. I have heard it takes 3 months for full effect?? Does that mean I will see increasing improvement? does anyone know?

My neuro did not say anything about blood/kidney test. Since I am his first patient that he has prescribed ampyra to, I wonder if he know. I did have blood work a few weeks ago prior to my mri so I think I may be covered.

My neuro didn't either, Barb.

I'm approved and Ampyra's overnighted to my door tomorrow! :)
I sure hope it helps with strength besides walking.

Kicker - still have blood/brushing teeth issue?
Karen - 50% improvement still? Thats exciting! What about arm strength?

Had my pt evaluation last Tuesday. I have not heard anything from neuro or ampyra. I plan on calling my neuro's office tomorrow to check on progress.

I've been on it for just under a month...
At first it seemed like a miracle! I was getting out of bed/chair like there was no problem, dragging rt. foot was decreased, and I seemed to be walking better.
Then about a week or so ago I noticed a return of the sxs...and my stomach is upset, my throat is sore, and I feel crummy.
So when I see my neuro next time, I will ask him whether or not I should stop...:(

Debbie, I have read on other sites where people have been experiencing sore throats, nausea, or headaches for a few days. And it seems to be happening to those who have been on ampyra for a few weeks. While some are stating it has not seemed to help at all, other people that are on it suggest it is helping with lots of other symptoms (fatigue, heat, etc) in addition to walking. Hmmm.

Thankyou for all the feedback so far. I got it today and will start it tomorrow or Thursday.

Sore throats - how much water are you's drinking/day? It helped ALOT with rebif sides when I took R.

Have any of you had white blood cells checked before and now? Like to know effect on WBC and RBC while we're at it.

Good luck Eddie with Ampryra tomorrow. I hope it helps you.:) Keep a journal everyday so you have a complete comparison of the pro's and con's of the drug. Are you still on Ty?

I was going to start a thread about the low mood I've experienced since I started Ampyra...
I began taking an AD again at the end of April due to situational depression, and I'm in therapy again, which helps tremendously. I started on Ampyra the last week of May.
But about 2 weeks ago I started noticing that I was very low, and kind of grumpy. I try to use a lot of techniques I learned in therapy to center my thoughts and let go of these feelings, but it has been extremely difficult...and my neuro has been discussing depression with me the last two visits.
Now it could be tied to my not being allowed into a clinical trial, which occured almost 3 weeks ago, but I feel as if this low mood is kind of chemical-driven, if you know what I mean...doesn't feel situational.
So I'm wondering if anyone has heard of patients on Ampyra who are experiencing depressive/low moods?

:heartthrob: ((((Debbie)))) :heartthrob:

Deb anti d's are a great thing if you ask me. Do you feel angry at all like body builders that take too many "enhancers"? Wondering if ampyra is similiar which would surely increase strength. I didnt start yet. Tomorrow likely. Im busy and want to be able to push my body to exhaustion to see if it really has potential.

Lady yes i'm still on Ty & the MS is still progressing quick. Boohoo!

First dose will be tonight. Has anyone had Sensory improvements? Not being able to tell what im touching with right hand (and left pinky now) is what drives ME crazy. Had the same learning remote for 20 yrs and if I didnt play it like a guitar i'd be screwed. Sensory?

Was turned down by my insurance for ampyra again after pt evaluation. Reason -- I am ambulatory. Based on my average of three 25 foot walk (timed), I barely need a cane. The therapist agreed that I should use a cane when I am outside my house. I guess I walked too fast:rolleyes: My problem is that I can first walk, but then my gait becomes more pronounced and I slow down a lot. I should have scheduled my appointment in the afternoon instead of the morning. My gait also deteriorates throughout the day. They suggested that I might benefit from pt.

The nurse said that once the drug is on the market longer, they may be able to get them to reconsider.

Sheesh, Barb, I can't get it because I'm not ambulatory enough and you can't get it because you are too ambulatory. :rolleyes:

I'm considering discontinuing taking it...my foot is dragging more again, and I'm not walking as well as I was...I was hoping that the med had taken time to find itself, as many on other boards who take it have found...they have a reduction in effectiveness after being on it a couple of weeks, then it begins working again. This hasn't happened for me yet...I noticed it stopped working about 1 1/2weeks ago, and thought I would see the rebound already.:(

The headaches and sore throat are not fun either:( Neither is the upset tummy

I had an appt with my Neuro Monday and she told me about Ampyra ER since it was now available. She is not pushing but wanted me to know about it. I told her I would check it out on the Internet and NT and see what people were saying.

I have been having the "rare" reactions to meds recently and such a bad experience with Avonex that I really don't want to go on anything again.

She is also concerned about trying anything new since I had the outbreak of skin cancers. We both pretty much agreed to just continue to treat my symptoms as we have done for the last 18 years.

I hope it helps Eddie and those of you that are going to try it. I will keep checking on the thread to see how you all are doing. :hug:

Well I took it once per day for a few and today started taking it 2x. No sore throat. Only sore throat was first night I took it with my other handfull of nightly meds and it stopped dead in my throat! Scrathced it but no problems since the morning after. If any of you stop it please let me know if you're worse off then pre ampyra.

I have been on Ampyra for almost 2 months now, and have noticed that when it wears off, I am very aware, my legs become weak, I become clumsy, and my coordination is not good.. and when it wears off, my body is definitely worse feeling then it was when I began ampyra. Yesterday am I took a pill and havent since and am very uncomfortable with how my body feels right now.. It is tight and weak and slightly spastic in my legs.. very disturbing to think this may not wear off.. I am not sure what to do. Do I stay off for a bit and see how my body responds? Is it simply going through a 'withdrawl' of sorts?
Anyway, thought I would share this..

I haven't heard any really possitive reports about the efficacy of this drug. so far.:(

Anyone else?

Welcome to NeuroTalk, Claire. :)

Quick reply - Im doing good so far. Strength is there but I use Testosterone inj. slightly high dose 100mg every 7 days. No sensory help from Ampyra at all. will be getting doppler n MRV in couple weeks. Praying I have narrowed vein or art (ccsvi).

I am ampyra user
 

I have been taking AMPYRE for 2 weeks. Tried all the other DMD for multiple sclerosis, all with troubling adverse reactions. This being a neuron potassium channel blocker, that is now FDA approved. After using other meds, not approved with NO positive effects. I wanted this one. I BELIEVE that nothing good comes surpressing the immune system.

I still have MS, I still catheterize 6-8 times a day. When I forget I will be incontinent. I still use a wheelchair, it is just alot faster getting to one place. I am exercising to strenthen the legs&the core muscles.

Had this disease since, 1979. It is going to take some time to get ambulating how I use to,which time and patience I WILL obtain my goal.

Good wishes for you (((((Vane)))))

Let us know how this treatment helps and works for you.

What ampyra has done for me
 

Cleared up my head. I can put together my thoughts and speak them so I can be understood. Tolerate the summer tempertures, keep the ac set @73degrees and still be able to physically function. Take a shower indepentently, with my shower bench. Able to walk short distances with walker. Less spasms, I only need baclofen 10mg 3x's a day. I do not fall out of my chair because of them, that happened frequentley before Ampyra. I feel like I have a purpose being alive.

I highly recommend this medication. I take one 10mg tab every 12hrs. I will give Fampridine-SR after FDAapproval. Once a day is better than twice a day. No negetive side effects for me.

Love to hear other experiences with it.


Sincerely,

Vanessa Rorison

As far as spasms go for me, Ampyra sure didn't reduce them. They're still terrible. Forgot to take my morning Baclofen 40mg (120 per day) and holy bleep. I took them throughout the day and were still bad even when I went to bed.

Sensory is still going downhill.

Strength is there but I have to hand it to testosterone (80-100mg week) & daily exercises including swimming.

I can't recommend Ampyra as of now over cheap testosterone. Everyone's MS is different though so try it..maybe?
If something improves strength by jumpering nerves, why doesn't it improve sensory??? I don't understand this one.