not a question..new drug for MS

[meg321]

There is a new drug  :   http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2239g to help walking with MS....I can't read it all at once but my MS nursejust sent it to me....

meg

[meg321]

I knew it sounded to good to be true...actually, I wasn't  thinking about trying it myself.
But it might be good for someone else.

Anyway. my Doc does not give me everything thats comes along or that I want.  And thats a good thing..

will read more on it tomorrow...

thanks, meg

[kmil1999]

thanks. found it on the website at

http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2239

Karen

[shoshin]

Fampridine-SR is a sustained release version of an old drug called 4-aminopyridine (4-ap), which was originally used as a bird poison. I am on non-sustained-release 4-ap, which is currently only available from compounding pharmacies (and I don't think all doctors will prescribe it).

As I understand it 4-ap is supposed to make the demyelinated nerves conduct more efficiently so they work faster and for longer before they give out. My neuro prescribed it when I complained of lack of endurance while walking.

The flip side of more efficient, faster conduction is that it increases the tendency toward seizures (sort of the opposite of anti-seizure meds that are taken to tamp down neuropathic pain). So epileptics or people who are predisposed toward seizures should not take 4-ap. There was some concern that this would cause problems with the drug being approved, although the increased seizure rate appears to be not all that much higher than that seen in a normal population.

The advantages of Fampridine is that it will be mass-produced so it will be more standardized and less error-prone than the compounded version and that since it's sustained release, the amount that is active in your body will stay more stable. It might also be safer since the max amount circulating in your body will be lower. It might also be more expensive.

I don't know that it's been a huge help. I felt improvement when I first started then felt like I was getting worse. However, the couple times I tried to stop taking it, I had more problems fairly quickly with walking and endurance. For example, we went to a store and I had trouble walking and then, while waiting for my husband to pick out some toys for his friend's kids, I got so that I had to sit down immediately (sort of like a bathroom emergency) even though I was leaning on the shopping cart. Sometimes I have trouble staying standing, but not after such little exertion. Might have been some kind of anti-placebo effect, though. So I don't know.

sho

[Lulu54]

Meg,
here's a  couple links that might be of use/interest:

this weeks announcement-

http://www.pharmatimes.com/WorldNews/article.aspx?id=16746


the mfg's website

http://www.acorda.com/pipeline_fampridine_ms1.asp

You sound very excited about this - I hope when it becomes available, it will be of use to you.
Lu

[meg321]

Yes, thats it..fampridine...yes find what you can, please..

thanks, meg

[sllowe]

The med is called fampridine and has shown some real promise for improved walking.  I remember an MS center neuro here talking about it at lecture earlier in the year. We'll have to pull the study results and get a health page going on it.

[Deb61]

I couldn't get the site to work either.  However, I found a link that was just posted a couple of days ago about a drug, Ampriva, which helps with nerve conduction.   This drug hasn't been approved by the FDA yet, but is said to be the first drug to improve nervous system function in people with MS.  However, there's some serious risks and side effects.  Here's the article:

http://www.webmd.com/multiple-sclerosis/news/20091016/fda-panel-new-ms-drug-helps-walking

[kmil1999]

I couldn't open the link.  What is the name of the drug or article?

Thank you so much!
Karen