Wednesday, August 13, 2008

4 WHAT ???




That's what I said.


I had my neuro appointment last week. It went well considering. I have no new lesions despite refusing disease modifying drugs. My doc again pushed his vision for me to use Tysabri, but more gently this time. (most likely because of lack of evidence of progression on my films)


What are we considering?


As I waited...and waited, for the doc to enter exam room 3, I began reading a free booklet called Living With MS. Just before I was greeted by Neuro-Man, I was reading a passage about drugs for symptoms of MS fatigue and symptoms, especially brought about by heat. This of course caught my eye because I live in South Florida. Heat is one of my major obstacles, and the drug I used previously for fatigue was not tolerated well and had a new FDA warning on it. The drug that was being discussed was Aminopyridine or 4-AP.


I had never heard of it. That surprised me considering I thought I had voraciously read everything about MS in the first 2 years of my diagnosis, and have been practically OCD about checking all that Google reader has alerted me to.


So, after exchanging small talk about nothing new in my head, cervical spine or thoracic, and describing my symptoms as SOS, I asked about this 4-Whatever, that I had the little book dog-eared to.

"Oh.." he said, "I have a (note the singular) patient on that and she does well with it. Want to try it?", as he wrote on his prescription pad.
"How is it different than Provigil, what is it and how does it work?"
"I don't know."

HUH?

As a rule I like when doctors admit that they are not the all knowing all seeing deities that they often portray, but this was unsettling.
"You need to get it from a compounding pharmacy." was all he said as he handed me the script.

It kinda reminded me of a time (decades ago), when someone (not in a white coat and usually at a concert) said, "here try this."
"What is it? What does it do?"
"I got it from so-and-so, she really digs it!"
"cool!"

I came home and excitedly Googled this new little pill.
I found :


4-aminopyridine (also known as 4-AP and Fampridine) is a drug that blocks the potassium channels in neurons. This effectively improves the transmission of nerve impulses down damaged axons. It does not replace damaged myelin but users of 4-aminopyridine report dramatic improvement in a number of symptoms especially paraesthesia. It should be born in mind that this is an experimental drug and the side-effects are uncertain. Dosages should be carefully regulated as potassium is a chemical that is used extensively in other parts of the body including heart functions.

Agriculturally, 4-AP is used as an extremely effective bird poison sold under the brand name Avitrol. It is highly toxic to all mammals including humans if dosages are exceeded, and, as an experimental drug, recommended dose data is unavailable.

A slow release formulation of 4-aminopyridine is supplied by the Irish drug company, Elan Corporation, and is currently being tested by Acorda in two phase II trials in the US. It is currently awaiting authorisation by the US Federal Drug Agency (FDA).


I also found that Lisa, at Brass and Ivory had recently written about it and had many resources listed. (as usual, Great Job Lisa! )

So...what does the Bubbie make of all this? Hmmm, a bird poison? Not FDA approved BUT I can get it from a compounding pharmacist? How much do you take, and when? What's the difference between what I can get from the druggist and what is in clinical trials and not yet approved?
Potassium? Isn't that essential to important things, like...my HEART? Side effects? Will birds treat me like Tippi Hedren? ( Was that her in THE BIRDS?...MS brain fog)

Way too much to think about now. I'm going on another trip to see my kids next week. I'll return to my investigation next month.

Meanwhile, feel free to comment on whatever it is you know on the subject, as I am too confused to ponder and too old to say, "Cool! OK!"




8 comments:

LISA EMRICH said...

Hey Bubbie!

Yep, lots of research into 4-AP and Fampridine-SR over at my place. Here's one post which lists alot of the published literature regarding the chemical/drug:

4-AP, Fampridine-SR and Multiple Sclerosis

Here's a post about the yet-to-be FDA-approved version and some of their pre-launch activity:

Pharma Wants You to Walk Faster and Easier for $10,000

Here's a post summarizing a conference call with the CEO of the pharma company. Some questions as to safety and effects were answered:

I Have a Voice and I'm Learning How to Use It

Seems lots of people experiment with it and there's a compound pharmacist who has lots of experience, complete with recommended dosage increases, for MS patients. I've not tried it so I can't give you any personal insight. Sorry.

Enjoy your trip.
Lisa

Denver Refashionista said...

Well no comments on the meds but have a nice trip.

BRAINCHEESE said...

I put my Internet MD license in the trash just this morning...sorry kid, got nothing here. Should have mailed that license to Lisa I suppose...LOL

Linda D. in Seattle

Miss Chris said...

Considering there are so few drugs for M.S. it always amazes me that doctors don't know all there is to know about those drugs.

Anne said...

If you are doing well w/o MS drugs, I would continue the course. I am out of my "let's try this" mode and thank God, I am not a guinea pig for anyone.

Although some people enjoy trials, I fear them because you just don't know.......anything about them - real, placebo, side effects, etc.

So enjoy your trip. We are leaving on Sept 14th for Canada and will write when we get back.

Take care,
Anne

Anne said...

If you are doing well w/o MS drugs, I would continue the course. I am out of my "let's try this" mode and thank God, I am not a guinea pig for anyone.

Although some people enjoy trials, I fear them because you just don't know.......anything about them - real, placebo, side effects, etc.

So enjoy your trip. We are leaving on Sept 14th for Canada and will write when we get back.

Take care,
Anne

Merelyme said...

oh my...i would be very cautious. in my limited experience with docs...it is true...they don't know everything and especially those important little details.

have fun on your trip bubbie. i hope you get to forget all about MS...i know that is probably not likely but...it is my wish...for all of us.

Shauna said...

Your neuro man didn't know about it? That's scary.

S.

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