Ampyra update?

[essdipity]

Now that Ampyra's been available (at least in the US) a good while, I'd like to hear about users' experiences with it. If you have tried Ampyra, do you feel it has helped you?

Specifically---

Has your walking ability improved?

Do you suffer less from heat sensitivity?

Do you have less fatigue?

How long did it take to feel the effects?

Based on your experiences, it it worth it? Would you recommend it to others?

Have you had signicant side effects or negative effects?

Any other comments or suggestions?

Thank you,
ess

[shermay]

Thanks Ess for the bump, I missed this too.

I'm still waiting for my Neuro to give me this 'pill', however it is/and was interesting to see what the other members experiences of Ampyra are.

Is it worth it or not!

I don't have a fear of needles at all, but I do with a Pill.

Guess I'm a bit manic, because my Neuro told me that I am the only one to refuse beforehand on taking a tablet and not injecting:/

Thats me;))

Debs X

[Guitar_grrrl]

I'm on 4-Aminopyridine, the precursor to Ampyra  (just lacks the time-release chems).  I've been on it since July.  Here's my take:


Has your walking ability improved?  No

Do you suffer less from heat sensitivity?  Maybe

Do you have less fatigue?  Def NOT - but I may be heading into a flare right now.

How long did it take to feel the effects?  My guitar playing stamina improved in about 2 months.

Based on your experiences, it it worth it? Would you recommend it to others?
It's barely worth it.  I may quit for a while and see what happens.

Have you had signicant side effects or negative effects?  No

Any other comments or suggestions?  I've heard both the 4-AP and the Ampyra have mixed results.  Caveat Emptor.

[Sarahsmom46]

I have been on Ampyra since last July - wow that's been 7 months now.  I kept telling myself that if it didn't work or stopped working at some point, I'd quit taking it and save my copay.  Anyway, here are my responses to your questions:

Ampyra has helped my walking speed.  I'd compare my walking now to the difference between using those moving sidewalks at the airport as oppposed to waling along side on regular ground.  I walk faster but not extraordinarily faster.

I don't notice any difference with heat sensitivity but we'll see when it becomes hot again.

I noticed that my walking was better within about 2 weeks. No significant side effects for me.

I'd recommend that if you have the opportunity to take this drug that at least you should try it.  If you don't notice a difference within a couple months, then make the decision about stopping it.

That's my 2-cents worth.

Julie

[cashu17]

I 've had MS symptoms for 16 years and was diagnosed 11 years ago.  

I have been on Ampyra for nearly six months.  

The first two months I can't say I noticed any difference from being on it.  Slowly I noticed an ability to improve my stamina with activities.  Prior to Ampyra I exercised regularly but usually had to go to bed for a couple of hours after a big bike ride or something similar.  That doesn't happen any more.  I have also been able to improve my strength when lifting weights.  For several years before Ampyra, I couldn't seem to improve on my weight lifting efforts.  

I've never had heat sensitivity so I can't comment on that.

I do worry about side effects and the potential risk of seizures.  I had to stop another medication because it too had the potential to cause seizures.

I think the cost is atrocious for a drug that is for management of symptoms..

I had to have my arm twisted by my neurologist to try the drug but I am glad I did.  

I hope this helps.

[addicted2harleys]

I am glad you bumped this because I missed it the first time around.  This is something I am interested in knowing, too...

Addi

[essdipity]

bump