Anybody who has/is using 4-AP?

[newme]

My neurologist prescribed 4_AP - not Ampyra. So I got it filled at the compounding pharmacy. I took one (10mg) and felt absolutely awful. Doc said to stop so I did.

Six months later, another visit, he said try taking the capsule apart and take only 5 mg.

I did. I feel GREAT.

My question is: I now take three a day; one at morning, one at lunch, one at supper. This makes them about 5-6 hours apart. Those of you with experience, do you take on that type a schedule? Any thoughts about stepping up to 10mg?

I appreciate all that you guys offer. It is wonderful to be able to bounce things off people with personal experience!

[pb909]

I started on 4-AP when I was dx in 2009 taking 10 mg twice a day 12 hours apart and had no issues.

My neurologist switched me to Ampyra when it came out and I'm still on the same twice a day schedule.

Both seem to work equally as well for me.

[knuckle]

I've been taking 10mg 4-AP instant release every 5-6 hours now for about four years with no issues, not at night. Helps with leg strength and spasticity.

I get it from Skip's Pharmacy by mail order at a cash cost of $110 for 300 10mg caps - a little over three months supply.

I also take LDN and Baclofen with 4-AP.

[kjane]

4-AP

I took this 8 years ago. Initially, I walked much better. As my doc increased the dosage, I had too much tingling/buzzing and ended up w/ a bad reaction. Off of it a few weeks. Didn't help the second time around--led to an emergency room visit because of same symptoms. I stopped taking it. Make sure your doc makes the dosage decisions. Hope it works for you.

[lori]

I've been taking compounded 4-ap for at least 5yrs. It's been so long i can't remember what my initial capsule mg were. They may have been 5mg because my neuro insisted on caution. I know I started at !x (one a day). My first dose made me slightly dizzy, but noticebly stronger on transfers.

I now take 10mg on the same schedule as you. I always think less is better, so if 5mg is working I'd stick with it. That said you body would probably tolerate a higher dose now.

I started with 4-ap before Ampyra was released. My neuro asked if I wanted to switch and I said no. It really angers me that a drug company can charge $1000/month for a $30 drug that's been around for decades.

I'm glad it works for you.
lori

[mtnwillow]

My neuro prescribed 4-AP and I took one dose. Within one hour I felt as though I had been poisoned! Dizzy, nauseated, fell on floor when trying to get to phone to call for help. My caps were 10mg compounded by Clarks. I asked my neuro about taking a lesser dose but he says doses of less than 10 mg are ineffective.

[newme]

mtnwillow - I must respectfully disagree with your doc.

My experience sounds exactly like yours! Within an hour of my first capsule, I was wobbly (drunk-like) and tingly all over. My doc also said don't take it again.

Then 6 months later he said try taking half. I have been doing that for about a month and it REALLY is helping.

I still get the drunk feeling if I take them too close together (or maybe it is because I am not weighing when I am splitting them).

We should all do what is best for us. For me, I'm not sure I even wanted this to be the answer but in a lot of ways, I think it might be (at least it helps).

[annintexas]

4-AP & Ampyra

I took 4-AP for about 4 years and it seemed to give me a lot more energy and heat tolerance. I was taking 10 mg. twice a day. Maybe it was placebo effect--I'm all for that but it got where it was not helping and I stopped.

I've had MS for more than 30 years -- dx'd in 1981-- 10 years R/R, 20 years SP. My neuro now has me on Ampyra to see if it will help with walking more and using scooter less.

My neuro said absolutely to insist on a $40/month co-pay. It is sold and delivered directly through the Manufacturer, Acorda. Sort of ... You actually phone Accreda 888-881-1918 for what is called Mitigation. Or co-pay assistance. 800 803 25423 is another number we had to go through. Medco is where we usually order our drugs. From now on we don't order anything -- They just the send drug every three months with 3 refills. We get a bill from Medco for $1000/mo. and we pay $40/month.

Confused? Us too. I went through a lot of testing to make sure my kidneys were A-OK--if yours aren't, don't take it. I take 10 mg. extended release every 12 hours. A larger dose can cause seizures. Never take it you have a fever. The Ampyra folks will have a nurse talk to you regarding side effects -- they are very fussy that you are taking it properly.

I take it at 7 am and 7 pm to avoid insomnia. There can be a lot of other side effects. I have been on it for only 2 weeks so no idea if it will help. I'm no expert -- just passing along info I've gotten from my neuro, my neuro/urologist and the folks at Ampyra.

[manderson]

I used to take 4-AP, and really liked it. There were no side effects for me. I switched to Ampyra when it came out, simply because it is covered by insurance. I actually think the 4-AP worked a little better for me. (a bit more energy)

[skreynolds57]

I been using 4-AP for 4 years. 10 mgs once or twice a day. I've not had any problems. As with most things with MS, individual results vary, widely in some cases. Negative side effects are the norm. Worth trying, actually helps me.

[newme]

Just a follow up.

I stopped taking the 4-AP. I did a little research on the side effects. I found that I was exhibiting a LOT of them. I didn't know if they were due to the 4-AP or something else so I experimented by stopping for a while. All of the side effects went away.

I have taken it since then and discovered two things. One, if I just take one, I have limited side effects but they are ones I really don't like (mainly dizziness). If I take more one, all of the symptoms come back.

I talked with my neuro and he said if the side effects are more troublesome than the benefits I should stop the drug. And so I did. Now it is more important to exercise regularly.