4-AP, what’s people’s experience of it? Does it work? How can you get it and what does it cost?

After some more information. Walking for family member has deteriorated very rapidly and badly in the past 4 weeks. They are finding it difficult to weight bare. 4 weeks ago they could manage with a stick and stand for very short periods. I’ve seen post on here about 4-AP, what’s people’s experience of it? Does it work? How can you get it and what does it cost?

Thanks in advance

[monkeybus]

mod4alll.com/store/index.ph...

I've taken it practically every day for about five years. I couldn't live without it. It's surprising how quickly spasticity can come on.

I used to take a lot of Piracetam as well, doesn't work so well these days.

4-ap is so widely used in the MS community, has to be worth a go if you ask me.

[Equinney]

If you are in the US good luck on getting insurance to help. Mine would not. If they would have, Ampyra would have given me 2 months free and covered $1000/month for the rest of the year. My neuro tried her hardest and they wouldn’t budge because my diagnosis wasn’t MS. But I hope you can, Ive heard great things.

[monkeybus in reply to Equinney]

That Ampyra is plenty pricey. Same chemical, just with a load of junk surrounding it so it slow releases.

There is that cheap generic, Dalstep. Some excellent reports about that online.

mod4alll.com/zc11/index.php...

Either way, you either dig deep into your own pockets if your insurance is too miserly to pay out, or you take matters into your own hands.

We focus a lot here on these new drugs being developed more or less for our disease, but we should all demand existing meds get approved for us. Stuff that's been proven safe, good enough for MS, I wants it too.

[Allder in reply to monkeybus]

Since October last year Ampyra (or Fampyra as it marketed as in Europe) is free for MS patients here in Sweden but don't think it would be a problem for them to give to me. I see there is a lack of studies how well it really works, so best is of cource to listen to those who takes it. I started with modafinil after reading on this forum and it changed my life🙏 so maby time for next improvement now

Monkeybus how does Ampyra help you? Is it for balance, spasticity or both

[monkeybus in reply to Allder]

Yep, Modafinil changed my life too. I am taking a lot less lately, my fatigue is easing off. Fantastic. If only my spasticity would take a break as well.

I get confused with all the names for 4-AP

4-AP is also sometimes called Fampridine, likelt because Fampridine sounds like a proper name for medicine, 4-Aminopyridine sounds like a scary chemical.

Now I know Ampyra is called Fampyra by the European Medicines Agency

ema.europa.eu/en/medicines/...

But Ampyra is 10mg, compounded to slow release (supposedly) over the entire day. Take it in the morning and you are good all day. I don't know about that, it is a nice idea, but I don't know how well it works in practice.

My 4-AP is 5mg, quick release, and I generally take whenever I feel my legs dragging. So, on a busy day, I could be taking 25 - 30 mg. You can feel it hit, and it instantly changes my walking ability.

It is walking speed that really improves. I can walk fast, and in a straight line, not staggering about, side to side like a drunk. Without 4-AP, I appear genuinely disabled, but on 4-AP, over short distances, people assume I just have a sports injury. It is impressive stuff.

It stops (to some extent) the neuropathy in my feet and toes, I can wiggle my toes and feel touch there, and it helps constipation (somewhat).

I posted before about 4-AP-3-MeOH

mod4alll.com/zc11/index.php...

This is the stuff. This is good for walking speed (both fast and very slow), balance, sensation. I used to love that stuff. 0.5mg as well. When I first took it, I managed a sort of tap dance to show my friend how good it was. Stand on one leg, etc.

Have a read up on that. People have been taking it for years now, mod4all sell it by appointment now, too many people complaining it doesn't work, but I see others swear by it, especially people with spinal cord injury.

[SongStream]

I only tried the pharmacy compounding which had no effect. Perhaps the brand name would have but I won't know until it's covered by my insurance.

[julie_]

I take 4-AP and it's not covered by my insurance. I take only 20 mg/day (split into 5 mg doses x4) as I understand more could lead to stroke. I don't want to take any chances!

I take the 4-AP together with 20mg of baclofen.

It helps me with mobility. If I don't have it, I cannot easily stand from a sitting position. However, I do NOT have such results as monkeybus ! It does work quickly but I STILL walk as if I'm drunk! So much swaying and absolutely no speed. Even so, I do not see myself not taking the 4-AP. Alright, I have to mention that I have very bad sciatic pain which affects everything.

I asked about the 4-AP-3-MeOH at Kennedy Krieger and there isn't enough study for them to even consider it.