Ampyra?

[Coslet]

Who’s tried it and how have the results been?

[Travzw]

I tried it but it was compounded through a local pharmacy because I couldn’t afford the brand and insurance wouldn’t pay because it's not an approved treatment for AMN. I really only experienced face numbness with no benefits. It does seem that it depends on the person because lots have said it's helpful.

[tieaknot]

My neurologist wants me to try it. It is now generic and my insurance will likely pay for it now. I’m hesitant because I had read that some people have had issues when stopping it. I’m considering trying it though since my walking has gotten worse and I am tripping and falling more often. Will be following this!

[Coslet in reply to tieaknot]

Do you have toe drop/drag?

[tieaknot in reply to Coslet]

I have gait issues and sometimes my leg just doesn’t do what I tell it to. And if I walk for a while I do end up with foot drop and I scuff and catch my right toe and often end up face planting (or attempt a roll to avoid that! It’s not graceful or pretty but it works usually 🤣)

[Coslet in reply to tieaknot]

I have stuntman skills at taking a fall.

[Catherine62 in reply to tieaknot]

Interesting. I had not heard that it is now generic—same name? I took Ampyra for about 18 months when it first came out about 10 years ago now. I’m still amazed I was able to get it for that long without an MS diagnosis, until I had to switch insurance providers and then my access ended. I then took the compounded 4-AP to little benefit. I wasn’t as gait-compromised then as I am now, and I can’t say I noticed a lot of improvement to my walking with Ampyra. However, in general, it helped with strength, endurance, and balance. (Assistance I’d welcome now.) Needless to say I too will look to see if it can be prescribed for me now. Thanks.

[tieaknot in reply to Catherine62]

Worth another try? The generic is dalfampridine I believe.

[julie_ in reply to tieaknot]

It's 4-aminopyridine, 4-AP and I am on this along with baclofen.

[tieaknot in reply to julie_]

The 4-aminoopyridine is the compounded version. The dalfampridine is the “pharma” generic version of the extended release (aka Ampyra)

[julie_ in reply to tieaknot]

Ahh, that's interesting! The generic is still at a high cost, correct?

I did not know Dalfampridine is generic and when I requested it from my insurance company, they quoted me a price that I assumed was Ampyra and I would need to do some extra work, along with my doctor, to get it approved at the lower price.

So I still use 4-AP, the compounded version.

[tieaknot in reply to julie_]

I don’t know the cost (haven’t tried to get it yet) but I think my insurance covers a portion of it. I believe it was just in the last year or 2 that it went generic? I wouldn’t be surprised if we still needed a prior authorization but my neuro seemed confident he could get it covered even if “off label” for AMN since he’s done it for others who don’t have an MS diagnosis. Will update if I try to get it.

[COwithAMN Administrator AMN EASIER Volunteer in reply to tieaknot]

I am puzzled by some terminology here. I assume you use the term "compounded" to mean a generic which is not a recognised generic, and one where the drug components come from various manufacturers? And you mean a "pharma" drug to mean a generic from a recognised pharma company?

[tieaknot in reply to COwithAMN]

Yes, I think that is a good clarification. The “compounded” version of 4-AP is only from a “compounding pharmacy” here in US. It is immediate release only and is not marketed or controlled by any pharmaceutical company. The Ampyra is an extended release version, and the brand name which was only approved for MS and most insurances would not even consider covering it for any off label diagnoses. Now that the patent has expired other pharmaceutical companies can sell the generic version, “chemical name” dalfampridine but can add a name of their own to it if they want. It will still be the extended release version which, to my understanding, cannot be compounded (made in compounding pharmacy from 4-AP).

My neuro said he’s seen fewer side effects with the extended release (but again most docs will side with the pharma companies) and if insurance will cover it now that it is cheaper generic? Then it may be even less expensive for some than the compounded 4-AP.

[Coslet]

I use these most days and a custom made AFO on days I climb.

thephysiomall.com/TurboMed-...

[Tim76]

I have tried the compounded version but didn’t notice any difference. Tried hard to notice a difference while on it and also stopped taking it a few times to see if I noticed but no luck for me.

[mariagno]

I use a compounded pharmacy version that is not extended release. I can tell a difference with control of my legs even though I don't walk much these. days. I like the non-extended release because I control when and how much I need.

[Coslet in reply to mariagno]

I’ve requested a script. I’m 10 years in to first noticing something was off. I’m 7 years in to steady mobility digression. I’m 18 months in to AMN and Addison’s diagnosis. Treatment for Addison’s has helped but other than baclofen for spasms I haven’t received anything to help with the AMN.

[mariagno in reply to Coslet]

Baclofen is a double edged sword. We need spasticity to stand and walk even without AMN.

Too much Baclofen and you lose your mobility due to drugs not AMN.

I took Baclofen for 15 years and dropped it in favor of stretching and exercise.

Check your dosing to make sure it is not too much.

[Coslet in reply to mariagno]

My dose got upped due to spasms at night... plus 3 times during the day. May back off my daytime doses.

[mariagno in reply to Coslet]

They took me up to 30 mg 3 times a day. I could not stay awake let alone walk.

I had them take me to 5mg pills that I could take whenever I wanted to. Taking a small dose more times a day might be better than 2-3 big doses a day.

Once I got down to 5mg-10mg a day, I found it was easier to finally ween off and sit on the floor with the dog and stretch.

[Coslet in reply to mariagno]

I’m at 10mg, 3 times a day and 30mg at night.

[julie_]

Ampryra is the one that is off-label for us, so I take the compounded version 4-AP. I am one of the people that it helps tremendously with "get up and go".

My doses are: 4-AP in 5mg caplets 4x/day. I understand 20mg is the max dosage per day due to stroke potential.

I take baclofen in 5mg doses, 5x/day. I usually break a 10mg tablet in half to get my 5mg dose. When I take the entire 10mg tablet, I'm much too sleepy.

[monkeybus]

Ampyra is just 4-AP, all brand named and time-released.

It's only 10mg as well. Taking one pill that keeps you walking all day certainly is a nice idea, but we all know life's not that simple.

I've posted endlessly about 4-AP,it's kept me mobile for half a decade now, 5mg every couple of hours (if I'm up and about).

Being trapped in the house on account of the lockdown, I'm staggering about like a drunk. Doesn't seem worth taking any 4-AP, but I do take some before I do the vacuuming.

Husband of the year, me.

Compounded 4-AP is well worth a try for spasticity.