Tuesday, April 14, 2009

Bird Poison for Fatigue?

Skip takes a compounded drug called 4 aminopyridine. It is a bird poison, but apparently can help humans with fatigue in the right dosages. Because it's not a patented drug, it needs to be purchased from a compounding pharmacy and it isn't reimbursed by her drug coverage.

When her neurologist first suggested it, I did a bit of research online about it. Interestingly, it seems to work better on MS folks who have the chronic progressive variety (not sure if Skip is chronic progressive or secondary progressive), are temperature sensitive and have had MS for more than 3 years. (I say "interestingly" because it seems most MS drugs are for those with the relapsing remitting variety.) It can help with fatigue and some other MS-related symptoms. I just found this great write-up from a site called TheCompounder.com. The complete post can be found here, but here's the content I found to be most interesting:

Probably the most common problems people who suffer from Multiple Sclerosis (MS) face on a daily basis are weakness and fatigue. Also. many patients are faced with visual problems and with cognitive or concentration effects. Very few of the standard treatments have much effect on these situations. However, clinical research has shown that many patients can benefit from a little-known medication, 4-Aminopyridine (4AP).

What is 4-aminopyridine?
4-Aminopyridine (4-AP) is known as a “potassium channel blocker”. This means that it can block the flow of potassium ions in nerve cells, which results in a more effective nerve impulse traveling down toward the muscles. As you probably know, the poor nerve impulses in patients with MS is (sic) the cause of most of the symptoms of the disease. The improved nerve conduction provided by the 4-AP means that the muscles have a "louder signal” to tell them when to work and the stronger muscle contractions improve strength and fatigue in many patients. However for reasons not fully understood, the 4AP does not work in all patients. One study indicates that 75% of patients with MS report a significant clinical response, and that 80% to 90% of these people will benefit from long-term administration of the medication. Other studies report a lower response rate, around 30% to 50%.

Before using aminopyridine, Skip tried a number of things for her fatigue, most recently Adderall. She prefers the aminopyridine because, as she says, "I know how I feel when I don't take it .... weak." The other day we went to a baby shower (on Easter!) and we realized partway through the shower that she'd forgotten to take her noontime pills and they were sitting at home. She was quite the limp ragamuffin by the time we headed home.


awb said...

I can't believe I just read a blog post about people taking bird poison to combat fatigue and I got excited about it! I have to ask my pharmacy about this one.



This is the same (similar) drug which Acorda Therapeutics has filed with the FDA for approval. It is named Fampridine-SR.

I wrote about Fampridine when Acorda filed in February. And last summer reached quite a bit about 4-aminopyridine and wrote about that on my blog.

It does sound very interesting and I'd be willing to try it. However, the annual price range which Acorda has discussed is $5000-10,000. My insurance won't cover that. If Dr.Cohen (the CEO) listened carefully when we spoke on the phone last July, his team will have designed an effective assistance program. I hope so!!

Cranky said...

Andy - hope something can come of it for you. Your neurologist, if he/she knows of it, can probably refer you to a pharmacy where they mix compounds.

Lisa - I'll have to check out your blog link. Thanks for that. Currently, we pay $200+ for a 90-day supply, so perhaps better to have it stay compounded!