Fampridine-SR medicine for SCI ("4-aminopyridine", "4-AP") made in ACORDA center

[sebulba]

Hello to everyone
My name is Sebastian from Warsaw, Poland. I am a C5 SCI survivor clasified as inconplete B+ in ASIA scale. I am interested in learning more about the medicine Fampridine-SR ("4-aminopyridine", "4-AP", “fampridine") made for SCI in ACORDA center. 
 
I am very impresed by results of this medicine & their research program. I'm very interested in trying this medicine on me and see potencial progress and how it may possibley change quality of my life.

QUESTIONS:
1. Is there any way that 4AP could be available to me?
2. Is this medicine available through compounding pharmacies (i.e., pharmacies that make medicines that doctors prescribe) ?
3. Has anyone ever tryed it?
 
I would be an honor to get information from you.
 
Best Regards,
Sebastian

[wheels5894]

Hi sebulba!

I take it you have seen the data about this drug on the web so you will know it is being trialled as a treatment for Multiple Sclerosis in which it seems to have some possibility. I trial I saw has 35% of those taking the drug get some improvement but this was being measured in increase of walking speed. For those of us here, well most, walking speed is unmeasurable as we don't do walking.

The phase III trials look as though they will pass with some improvement and not many problems with side effects but it could be a while before the drug actually gets to real patients. I suspect it is going to very expensive so insurance companies / health services / users will not be able to afford it initially.

The bottom line is that you are going to have to talk to your doctor about how well it might or might not work for you though bear in mind it has not been trialled from SCI so there may be no way to gauge this but you could ask anyway. It isn't approved yet in any country so you will have a wait before it does. Of course, if it works for SCI there is going to be a long queue of people wanting to try it....

[sebulba]

Thanks so much foir respond
Check out this cool website: http://www.sci-therapies.info/Pharm-Chronic.htm
It looks like it might be available through compounding pharmacies but I donno where and how to get it? What schould I ask my doctor for?

[wheels5894]

Well, the Fampridine is currently on phase II trials in the USA. It is still considered experimental not least because it is normally used as a bird poison and is also poisonous to mammals. Getting the right dose for people is going to take a while as the poisonous side might make the drug unusable for SCI if high enough dose cannot be used. In people we can't just give people too much to see if they die!

I's say there is a while to go (maybe several years) before it becomes available, if it can be made to work so I think we are all going to have to 'grin and bear' the conditions we have now even though a new drug might help in the future.

[Andy]

welcome to the forum Sebulba