Hi
Just wondering whether anyone has tried 4-ap? If so how did you find it? Benefits/side effects. Is it available on prescription?
Thanks in advance
4-ap- anyone tried it?: Hi Just wondering whether... - AMN EASIER
4-ap- anyone tried it?
38 Replies
•
Yojo, I've posted extensively about 4-AP on this site. 4-AP turned my life around (and Modafinil). I was almost evangelical about 4-AP for a long time, until I started frequenting the MS message boards. 4-AP is old news to them.
4-AP is part of my life now, and has been for about 2 years. Really works, mostly for walking speed. Gives a hit of energy as well.
Makes some people feel a bit sick, not me. But at high doses I feel like my skin is crawling. Soon wears off. The benefits far outweigh the side effects. 4-AP-3-MeOH has no side effects.
I alternate between 4-AP and 4-AP-3-MeOH, 4-AP-3-MeOH is the same, but 4-AP-3-MeOH is great for low speed balance.
I just buy it from mod4all, they've never let me down, but they are a bit slow recently.
mod4alll.com/zc11/index.php...
I'm currently taking high dose ALCAR, I'll post about this soon. Very good for my energy, and to a lesser extent spasticity. I'll rank ALCAR up there with Modafinil and 4-AP, it is that good
powdercity.com/products/alc....
Edit: Powder City is now no more.
I get my supplements from Pure Bulk now.
Very busy with work at the moment. I'll post more about all of this later.
Talk to you later, Yojo.
Hi again monkeybus going by what you have said i have just ordered some 4-AP from your link in this post how much do you recommend i take to start with and what is the delivery like also how long do you think it will be before i start to notice anything.
From what I can make out, 4-AP was championed by Dr Wise Young at Rutgers University. This is his dosing, ramp-up regimen...
Day 1. Take a 5-mg capsule in the morning.
Day 2. Take a 5-mg capsule in the morning and 6 hours later in the afternoon.
Day 3. Take a 5-mg capsule in the morning, 6 hours later in the afternoon, and 6 hours later in the early evening.
Day 4. Take a 5-mg capsule in the morning, afternoon, early evening, and night, all separated by 6 hours.
Day 5. Substitute a 10-mg capsule for the morning dose and take a 5-mg capsule in the afternoon, early evening, and night.
Day 6. If you have no side effects from taking the 10-mg capsule from the previous day, substitute a 10-mg capsule in the morning dose and the afternoon dose, then 5-mg in the early evening and at night.
Day 7. If you have no side effects from taking the 10-mg capsules in the morning and afternoon, substitute a 10-mg capsule in the morning, afternoon, and evening doses.
Day 8. If you have no side-effects from taking the 10-mg capsules from the previous day, take 10-mg capsules in the morning, afternoon, evening, and night doses.
Day 9. You may then want to adjust the timing of the doses, depending on the effects. For example, some people get insomnia at night if they take the drug just before sleep. If so you may want to skip the night dose or take the capsules during the day 5 hours apart (rather than 6 hours apart).
He says 10-mg capsules, but most people get 5-mg (I do).
He is a specialist in spinal cord injury. And that's a serious deal, SCI. Makes my spasticity look like a walk in the park.
Wise Young was behind bringing Ampyra to market as well. Have a good read of his forum sci.rutgers.edu/
If he says a treatment is a waste of time, I believe him.
I spent a lot of time reading up on MS forums as well, particularly thisisms.com/forum/
A lot of money going into MS and SCI research/treatments. There has to be some crossover for us lot.
Getting back to the 4-AP.
It was about 2 years ago I started taking it. I'd read about it being used to poison birds, and was apprehensive to say the least. When I first took it I had a hangover and it made me feel sick(er). I didn't take it again for about a month (I think).
But when I did, it was magical. My day is structured. Work. I know exactly where I will be at what time on any given day.
To do a walk that I usually lumber through, to do it with a touch more grace, more heel-to-toe, less flat-footed slapping my foot down, less foot-drop, raise my toes.
I have to concentrate, every step is hard work, but in all of the time I have taken 4-AP, I haven't fallen over once, even when drunk.
Sometimes I stumble because I try to walk too fast.
My dosing.
I take 2 5-mg capsules in the morning on an empty stomach, 20 mins before I head out to catch the train.
Then, I take one capsule every 2-3 hours, or if I am having an active day I take a capsule if my walking starts to deteriorate. If I know I will be sat down for an hour plus, I take a capsule 20 mins before I know I will get up.
The only side-effect with me is I feel like my skin is crawling if I take too much. Especially the skin on my face. Apart from that it is all good.
I couldn't function without 4-AP, if my supply runs low, I start to panic.
I'll just point out as well, people around the Interweb talking about it deteriorating over time. I'm sure there is something in that. Every medicine has a use by date.
I used to religiously keep mine in the fridge. I left some at my Mother's house for six months, just there in a hot kitchen, for half a year. Light, heat, temperature fluctuations, all that.
Tried it, just as potent. Just the same.
I believe the filler material is the key, and the quality of the original 4-AP.
Regardless, 4-AP is a regular treatment for spasticity in the MS and SCI community. It works for them, it works for me. Not addictive, doesn't do any damage, hasn't given me a seizure (yet).
Long post, this was. Self medication is no small matter. I discuss everything with my neurologist. 4-AP, 4-AP-3-MeOH, Modafinil, Armodafinil.
Be interesting to see how julie_ is getting on with her 4-AP as well.
Hi again Monkeybus i contacted Julie and her reply is on this post i am sorry to ask so many questions but you seam to have tried most things and are very knowledgeable i was wondering about the affects of Modafinil and Biotin and how you got on with them looking forward to your response.
Hello Andrew-432 ,
I take Modafinil with all my supplements, and 4-ap, and Gabapentin and Zoloft, sometimes with Baclofen.
Whenever I ask my neurologist out adding a new drug, he just checks online.
The only real danger is the Modafinil. Can make you obsessive. Have to keep an eye on yourself.
Easier said than done.
I've conquered fatigue. Spasticity is slowly getting worse.
I'm just treating the symptoms, not getting any better. Feel wide awake though.
I'm currently having a long, hard think about my future
You say your spasticity is slowly getting worse do you think the 4-AP has run its course or do you think it is with the combination of other substances combined could you let me know what you think.
Plenty of walking left in me. I've promised before, I'll do this week, I'll post videos of me walking with no drugs; me walking with 4-ap; 4-ap-3-meoh; me on piracetam; Modafinil; and a combination of all of the above.
You'll be surprised. 4-ap is pure magic.
I mainly use my crutches for big family days out, and whenever I fly. Gets me priority boarding and a ride in the electric car. Last week, I jumped the queue at immigration, went through the priority airport staff channel. Good old crutches.
I'll post vids later. Have to make the vids first.
Hi again are you still getting your 4-AP delivered ok only mod4all are having problems i ordered mine over a week ago and nothing no email no drugs and they say delivery to Australia in 7 days Lancashire in the uk in one day and i can drive to Lancashire in under 40 minuets from where i live well its not so bad for me as i have not started yet but people who need there drugs it must be bad let me know how you are getting on.
Yeah, I got an email yesterday. They had a lot of problems. The man who runs it is sick. We all know what that is like.
They are back on now. Lucky for me, I am getting low on Modafinil. If they haven't mailed you, I imagine they will before too long.
Normally as regular as clockwork.
Let us know what happens.
Well i tried to email them but the email address on there temporary home page is lacking a .com etc and would not work but as i have not started taking them yet i am in no rush but i will let you know how i get on.
Could you let me have there email address so i can contact them to get this sorted there is an address on there home page but it does not work looking forward to hearing from you.
I think it's support@mod4all.xyz I'll double check, I think that's it.
That is sort of what is on the home page it is just lacking the .com and thanks.
COwithAMNAdministratorAMN EASIERVolunteer
Hello Yojo
I asked about 4-AP at this weekend's ALD/AMN weekend that we have just had here in London. The question was directed to a panel of experienced scientists and clinicians who are either running trials or treating patients. The best answer I got was that there has been one limited trial of 4-AP (I think in Germany or perhaps the Netherlands) which seemed to show that some patients felt a benefit and some did not.
4-AP seems to be on prescription for MS patients in the UK, but not for AMN. There is always a huge obstacle in getting a new drug into the formulary in the NHS, which has to happen before it can be prescribed.
A drug which shows benefit for some patients but not for others sounds may not offer much that is different from Baclofen, which is the normal drug prescribed for AMN patients in the UK.
Chris
Hi,
I asked my neurologist about this but it's called Ampyra and I was told that there's no chance of getting it has its only approved for MS but she said that I could contact the MS specialist who would give it if I payed privately?
All the best
Steve
I too have used 4-aminopyridine for some time with positive effects. For me, it increased gait fluidity. If I skip a dose, I notice it. I have not had any adverse side effects.
In the states, I think there is virtually no chance in getting it approved with insurance. And without insurance, it runs around $1,600 a month (at 20mg/day, I believe). However, a number of compounding pharmacies are willing to compound an analog--meaning the same active ingredients--at a fraction of the cost ($70/month at the same dosage). I have used both the brand name (Ampyra) and the compounded version and they work the same for me.
If you are able, I would give it a try for a month. If you don't notice a different by then, it will not help you.
Best,
Brian
Hi Yojo,
I just began taking 4-AP (not Ampyra but the pharmacy-compound) in May, almost a month ago. I take a 5-mg capsule per day. I find I do have more gait fluidity (improved stability, better spatial awareness), more "get up and go" such as being able to get up from the dinner table 2 hours later and walk away with ease and a relatively faster pace (though not as fast as I used to walk).
The initial side effect was dizziness after one capsule which is why I have not increased my dosage. The dizziness has gone so I see myself increasing it soon. The reason being is, at this current dosage, I find the benefits inconsistent. There are good days with all benefits above, but there are still bad days when it feels as if I'm not able to walk.
I am paying $150 for 180 capsules or a 30-month supply and this is not covered by insurance. This was prescribed by my doctor. In addition to this, I take 15 mg of Baclofen per day.
I hope this is helpful.
Julie
Hi Julie i was just wondering how you were getting on with the 4-AP as i am thinking of giving it a go, has it improved your life and do you feel better also could you let me know where you get it from and what the delivery is, looking forward to hearing from you soon.
Hi Andrew, I must say that at first I was not feeling very confident about 4-ap. I began taking it early May. I took one 5-mg capsule and it made me incredibly dizzy. The dizziness stayed on in decreasing degrees for some weeks, all the time I wanted to increase my dosage to reach the required 20-mg per day. During this time, I was taking 20-mg of baclofen per day. Apparently, for me, the mix of baclofen and 4-ap does not work. I saw Dr Eichler in Boston and he suggested I try taking the 20-mg 4-ap during the day and take baclofen at night to help me sleep (I have trouble otherwise).
I am happy to say that after 2 weeks, this combination does not cause any upsets but not happy enough to say it works very well. My physio who treats MS patients tells me that I need to give it some weeks. I plan to stay on this track for the next few months. In conclusion, I am hopeful.
I hope this is helpful to you and all.
Thanks for the reply Julie i was taking baclofen around 12 years ago and it made my legs go even weaker so i stopped taking it i am sorry to hear you had problems but wish you the best for the future i do not have any 4-AP yet but have ordered some and i am looking forward to giving it a go could you let me know how you get on and i will do the same once again thanks for the reply.
I hope you get good results! I believe the baclofen was also making my legs feel weak. After these past few weeks, my legs do feel a little stronger. I just re-read monkeybus 's schedule for taking 4-ap. I believe 20-mg is the maximum daily dosage. However, we're all affected differently, aren't we? On the other side of what I'd written about my update, I also think that if I stop taking 4-ap, I would have a (more) difficult time walking.
The website for the 4-AP is a little slow at the minuet but it should be here soon and i will let you know how i get on monkeybus says his Spasticity is slowly getting worse i wonder if the drug as run its course i will keep in touch to see how he gets on as you may need to give it a rest now and again say the weekends anyway thanks for your answer and i will keep you posted on how i get on.
I was taking Ampyra for a long time and quit because although it improved my gait it made my legs super weak and wobbly. My neurologist got my insurance to approve it here in the state. The insurance paid month to month for awhile and then approved 6 months at a time.
Is 4-ap different than ampyra? The benefits seem better and if you go over the recommended does of ampyra there is a high risk of seizure.
The seizures, from what I have read have been exclusively in MS patients with brain lesions-a-plenty. In one case, the pharmacy put 100mg in one capsule. I should think that would give a rhinoceros a hefty seizure.
Ampyra is Sustained Release, 4-ap is generally instant release. Though some compounding pharmacies offer SR 4-ap. SR is a fascinating technology. Enteric coatings, shellac, micellar casein, coated matrix granules, et al.
Those Ampyra capsules are huge. What do they pack them out with?
@julie_ my spasticity comes and goes, but your problem could well be irregularly filled capsules. Could be.
If one cap isn't doing it for me, I just take more.
What sort of daily dose are you choking down?
monkeybus That's interesting about the filling pf the capsules. I'll take a closer look because I thought there was a capsule that looked like there was more space in it.
My spasticity is definitely made worse when I'm not moving about, say when I'm in the office. I'm already thinking of ways to get more movement in.
I just started taking a 2nd 5-mg capsule in the afternoon, that makes it 10 mgs/day.
It is all about planning ahead, isn't it julie_ ?
Crash into a chair at work, then 30mins before I heave myself up I take a 4-AP, 15mins before, I start balancing my weight on my toes, tensing my calves, then lumber up slowly. Don't fall over straight away. Control. Balance.
Helps if I am sat in a kitchen-style chair. Big, soft armchair-type affair and I stand little chance.
All the above is doubly important if I am on a bus/train.
I finally got a 30 day Rx for 4-AP. I am beginning with 5 mg am and pm. Can someone tell me at what dosage and period did one feel improvement? Will I benefit with this dosage or do I need to ramp up this dosage for any benefit?
My physio who treats MS patients says that the daily max is 20mg. I was also taking 10mg per day but I was advised this dosage is too low. He instructed me to work up to 20mg per day, taken over the course of 4-6 weeks before I get the full benefit. I currently take 15mg per day and that seems to work fine for me. I don't have consistent results, but there are other factors I take into consideration. I suspect you may need a larger supply and work out what works for you.
I've been able to take 10 mg after the dizziness wore off, so I will up to 15 this week. I went walking yesterday - trying to stay mobile - and I swear that I was able to walk further. But as you say, 10 mg is considered a low dosage. I will ramp up p to 20 mg and see how I fare.
I appreciate your comments. Thank you.
Oh yes, I had dizziness in the beginning too. It lasted a good 3 weeks with only 10mg per day. I remember I had a really good day on Day 6! No tightness anywhere, no pain! I was only able to walk slightly faster, which isn't much, but I was very optimistic. I have only had similar days since but still I'm glad I'm taking this instead of baclofen (which I take 1/2 tablet of at bedtime)! Let us know how it goes. I'd like to compare!
Will do!
Yesterday, I started 10 mg (am) and 10 mg (pm) taken with meals. Should I take this on an empty stomach or is it okay to take with meals? Does it effect its efficacy?
I honestly don't know if it affects efficacy or not if taken with meals. I normally just take it without meals. It hasn't caused any stomach upset. My dosage has been 5mg spaced about 4 hours apart. I kept my dosages at a minimum because of that initial dizziness. Has the dizziness subsided for you?
Hi Julie Are you still taking 4-ap ?
Thank you for asking, Cherie. No, I stopped taking it this past spring. Dr Fatemi says 4-ap has not proven to be effective for ALD/AMN and that Ampyra is only effective for a small percentage of MS patients.
The dizziness has subsided a lot so I can meet the 20 mg daily dosage. As you had commented, I will give this dosage 4-6 weeks to determine if it works for me. Thank you for your help!
Not what you're looking for?
You may also like...
4-ap?
So I have now taken both 4-ap and 4-ap-3-meoh. In my experience I have found that the 4-ap barely...
4-AP/Ampyra
I spoke to my neurologist last visit about 4-AP because it has been talked about here sometimes...
4-aminopyridine-3-methanol (4-AP-3-MeOH).
I have a lot of time for 4-aminopyridine, and despite a lot (most) of my posts being about drugs, I...
Anyone tried FES?
Hi everyone,
I am a 39 year-old male with AMN and associated walking difficulties. My specialist...
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...
Has anyone here tried acupuncture or a ketogenic diet to help with their symptoms? 
I have had 4 Adrenal Crisis' this year
MIN-102 clinical trial, is it worth?
Anyone else wearing AFO's?
