LDN and 4-Aminopyridine
 

Hey there -- have any of you that are on LDN been told you might want to also take 4-Aminopyridine?

I just started with a new Neuro (wonderful so far) and he is suggesting I think about taking 4-Aminopyridine also. I have googled this and it is a med for MS that is a potassium channel blocker that aides in the conduction of electricial impulses in demyllenated nerves. You take it in a small doses based on your weight. Bad news is that in a higher doses it is a poision used to kill birds!

I contacted Skip the pharmacist (recommended pharmacy for LDN) and asked him about it..he said he has many patients taking both LDN and 4-A -- he knows of no problems in the 4 years he has been mixing it for them....and sees no problem with it scientifically.

Anybody have any experience with 4-aminopyridine?

Your input is the most valuable to me!! :) Gail

Hi Gail . . . so nice to see you here!!

As I mentioned to you in private, I have seen this combo being discussed recently, but I haven't had time to research it as yet.

There is a board that caters to PwMS on LDN, so you might find additional information there; try googling LDN Research Trust . . . They have a great monthly newletter, so you could look back through those on the board too. Also, the lady who runs the site (maybe Linda?, can't remember at the moment), will answer emails if you contact her directly.

I would love to know more about the combo, if you find out anything. Thanks!

Cherie

4-ap
 

Gail I pm you christine
cherie what is PW???

PeopleWith.

4-ap
 

am going to try it as soon as it arrives - a lot cheaper then ampyra - that's for sure !

Hi ya Karen..:Wave-Hello:

and have been using it for a month - and my balance has improved a tad and I can actually pick up my feet not shuffle and can get into bed all by myself !!! too bad neuro's don't suggest it - a lot more affordable for those of us on Medicare - am taking 2 capsules 3x a day

Do both these drugs require a compounding pharmacy? Not sure I even have one within 50 miles. Can they do this through a mail order pharmacy?

Many compounding pharmacies mail things out.

There are some in Michigan too.

This is one that has been in business for a long time:
http://www.healthdimensionspharmacy.com/

And this one is good too:

http://ucprxmichigan.com/

Of course if you Google you'll find more.

How many grams is that?

You shouldn't be taking anymore than 4.5mg per night and yes, it should be taken totally, at night between 10pm and 2am

Yes, I get mine from Skip's Pharmacy in Boca Raton, FL. He sends it priority mail.

get mine from Skip's also - it's here in 2 days

taking 4.5mg LDN at night - 2.5 mg at lunch - helping me sleep thru the night

taking 2 capsules 4-AP 5mg breakfast and dinner = 20mg daily - can go to 30mg daily but haven't noticed much of a difference so decided to stay with the 4 capsules daily

Did your Doc prescribe your LDN doseage or Skip? I have been on 4.5mg per night for 9yrs and have always taken it at the prescribed, by Dr Bahari, time, between 10pm & 3am (me-midnight). Anything over 5mg, according to Dr Bahari, is too much'

I would be very interested in knowing how your LDN was prescribed, by who, and why? How long have you been on it?... And, is it working for you.

Thanks :)

Dr Sullivan located in Pennsylvania prescribed LDN - have been on it 2 years - the most I've noticed is being able to sleep through the night - that in itself a huge leap forward - take it when I go to bed - usually midnight - the 2.5 at lunch - haven't noticed a difference really

Sally, Dr. S told me to take an additional 4.5 mg capsule at noontime, too, when I complained about sapsticity in my legs keeping me from sleeping. I tried it and it made the spasticity worse. So I'm back to just one capsule between 1-3 AM.

I think Doc Sullivan is trying diff strokes for diff folks, which is ok, but I hope he tell patients that it is a trial and to never stop taking the correct amount at bedtime. :)

He is my LDN Doc too and has never suggested any different doseage to me, but then I don't complain. I'm pretty happy with how it seems to be working for me. :)

Carry on..:hug:

when I called for consult he asked how I was doing - I said getting worse - which I am - then he suggested maybe 2.5 at lunch might help - it didn't :(