Arising from one's own ashes. Like [up to 80% of ]a phoenix....

by Michael S. Kaplan, published on 2010/04/25 07:01 -04:00, original URI:

Wow, two off-topic blogs in a row. It must be one of those weekends. If =multiple sclerosis, iBots, drugs, and/or me hold no particular interest in your life, you can skip this one....

I thought I had moved past the $1000/month phase of Multiple Sclerosis.

Having rolled into a secondary progressive Dx (diagnosis), my Tx (treatment) options were much more limited.

Off my plate of opportunity are the Tysabri and CRAB (Copaxone/Rebif/Avonex/Betaseron) type drugs that are such the mainstay of the "supported" world of MS treatment for those who (like me) avoid the various snake oil solutions (I carefully define "snake oil solutions" to mean those solutions that do not have multiple double blinded studies behind them, as given the nature of the disease new treatments are guilt until proven innocent in that regard!).

But then comes a new drug.


It is pronounced am-peer-ah (as in "Have a Beer, Ya?"), not am-pyre-ah (as in "dude, is that Elvira?").

Gratuitous Elvira picture

Sorry Cassandra, maybe the next drug will have a better sound-alike name for the Mistress of the Dark!

Ampyra is also known as 4-Aminopyridine or 4-AP or dalfampridine or H2NC5H4N.

It looks like this if you should happen to care about such things:

As the Wikipedia article indicates:

Fampridine has been shown to improve visual function and motor skills and relieve fatigue in patients with Multiple Sclerosis (MS). 4-AP is most effective in patients with the chronic progressive form of MS, in patients who are temperature sensitive, and in patients who have had MS for longer than three years.

All of those criteria are fairly applicable to me at this point. And further that:

MS patients treated with 4-AP exhibited a response rate of 29.5% to 80%. A long-term study (32 months) indicated that 80-90% of patients who initially responded to 4-AP exhibited long-term benefits. Although improving symptoms, 4-AP does not inhibit progression of MS.

And interestingly:

Spinal cord injury patients have also seen improvement with 4-AP therapy. These improvements include sensory, motor and pulmonary function, with a decrease in spasticity and pain.

These are some very impressive facts and statistics.

Speaking as someone who hasn't played the soprano saxophone in 15 years, who hasn't been to Whistler since before it was renamed to Whistler Blackcomb, who hasn't been running in 12 years, who hasn't been able to walk across the street to work in ast least 8 years, who hasn'tr been dancing without looking like a dork in 10 years, who hasn't been dancing like someone who actually knows the steps in 15 years, even thinking about this drug's possibilities is, to be frank, more addictive than heroin.

I don't want to diss the iBot since it gave me a life again, something that had been eluding me for some time during my slouch toward Bethlehem that was the bulk of my 30's.

But as I found myself comp'd for parties that I would never have been invited to with models and centerfolds in attendance, as I was given all access passes to shows I would gladly have paid for, as I hung out at the Playboy mansion on Halloween with the best friend I have ever had dressed in nothing but gold paint and ran into Mr. Belding, as I fielded questions from models and adult film stars about whether it would be possible to do "stuff" in that chair without blushing, I realized that it wasn't by any means the life I had before.

It wasn't even a life I ever thought was possible.

I won't call it better or worse; it certainly had its moments. I had fun, and I only lost my Facebook account once because of the photographic evidence thereof.

But it wasn't my life.

I had its full measure and it was becoming a little boring for me by the end of last November. Maybe even a little before that, mind you. But that is about when I found myslf less likely, all things being equal, to do something wild as to not do something wild.

And I learned, by looking at it all through someone else's eyes by the middle of December that when used in more conventional situations the iBot had its ups and downs:

The lesson I learned was to no longer find it so interesting to talk about the iBot when people expressed interest in it. I am distractable enough that this is something that might never had occurred to me (despite it being true) had I not been spending time with someone who I could tell had lost patience with it, in a way akin to how I felt about someone I spent time with years ago who would be stopped for autographs (I much preferred to not have that aspect of life that circumstances enforced intrude on our time).

Now don't get me wrong, if my choice is between a regular wheelchair (or even a scooter) and the iBot, I'll take the iBot any day.

But if the choice is between the iBot and walking (or playing the sax, or running 5 miles, or dancing a tango, or ice skating with friends, or roller skating one Sunday, or skiing one Saturday) in the inconspicuous way that everyone else does it, I'll park the iBot somewhere without blinking. I don't need to be a show (up on 2 wheels) or a spectacle (climbing stairs).

Not park it too far away, in case I have just a Sabbath day's walk in me, even with the drug. But even so....

Ampyra's potential becomes quite astounding now.

I have the Rx (prescription). With my Dx (diagnosis) and my Sx (symptoms) , it is a reasonable symptomatic Tx (treatment) to try.

By report, my insurance company covers it 100% with no co-pay, the Cadillac-esque thing that I guess the plan may in fact be.

No pharmacy around here stocks the drug, apparently (well, none of the eight I tried) -- assuming 10mg BID (ten milligrams twice a day) -- the $1000/month price tagged drug. Talking to the pharmacy techs on a weekend, they don't even know if they can order it from their suppliers, who don't have it on the list.

But it is only FDA-approved since January, "available" since March. So it makes sense if they have not been asked yet, or put it on their lists yet.

I'll need to try them on Monday when they can talk to their suppliers -- just a month to start. It might be faster to get one month from the mail order pharmacy, though even that too will have to wait until Monday (they are not around on weekends either).

About rethinking limitations and what I may or may not like in who I am now versus in the past, my friend Cathy suggested to me via Twitter:

...where possible, dust off that part of your personality and try, try again. Ignore stuff you can't change. QED...

But now some things might change. Which perhaps changes thew landscape of these things.

Last week I was talking to my neurologist, who is really my healer, confidante, and therapist, at this point. She suggested I needed to change my residual image from that guy who can run/walk/dance/skate/ski/play since not only is it no longer me, but there are fewer and fewer people who have ever (and thus can ever) see me that way who I deal with even semi-regularly. Though she admitted changing the image based on whatever level the medication puts me at wouldn't be the most unreasonable of ideas.

She also suggested I not become so hopeful that I forget that it doesn't help everyone. I explained that I understand that.

But the scientifically proven in multiple double blind studies chance to potentially be up to 80% of what I was?

Holy crap!

Who are we kidding? I'd be paying cash out of my pocket for that if insurance wasn't covering it.

Now I just have to find a pharmacy that can get it.

And hope.

For the chance to rise from my own ashes in such a phoenix-like way....

Thorsten on 25 Apr 2010 9:04 AM:

"But the scientifically proven in multiple double blind studies chance to potentially be up to 80% of what I was?"

I'm sorry, if I'm dampening your enthusiasm with this, but that's not exactly matching what you quoted:

"MS patients treated with 4-AP exhibited a response rate of 29.5% to 80%. A long-term study (32 months) indicated that 80-90% of patients who initially responded to 4-AP exhibited long-term benefits. Although improving symptoms, 4-AP does not inhibit progression of MS."

Assuming that the term response rate is used in the same way as here: "In oncology, response rate (RR) is a figure representing the percentage of patients whose cancer shrinks (termed a partial response, PR) or disappears after treatment (termed a complete response, CR) . In simpler terms RR=PR+CR."

Then "a response rate of 29.5% to 80%" says that between 29.5% and 80% (I assume the spread comes from different studies) showed some form of initial response to the medication (but doesn't say how much of a response). It does not indicate the *level* of response.

Of these 29.5% to 80%, 80-90% then showed some long term benefits (but again, it doesn't say how much) after 32 months. So between 23.6% and 72% of the initial patients showed some benefit after 32 months. But from the quote it's not clear what the minimal  level of improvement is to be included and it's also not clear what the highest levels of improvement compared to baseline where.

Anyway, I wish you the best and hope you'll see the best possible level of improvement from this drug. But you might want to study the papers describing the results of the clinical trial(s) very closely to make sure you have a realistic understanding of what level of improvement to expect to prevent any disappointments.

Michael S. Kaplan on 26 Apr 2010 1:43 PM:

Ok, let's say "But the scientifically proven in multiple double blind studies 80% chance to potentially be better than I am now?" instead. :-)

Thorsten on 26 Apr 2010 8:03 PM:

That's definitely fantastic and I'll keep my fingers crossed that it works out really well for you. :)

I just wanted to make sure that you don't form an unrealistic expectation of the level of improvement possible and find yourself disappointed later on.

Michael S. Kaplan on 27 Apr 2010 11:06 AM:

well that part is unlikely, at least. Given my inate cynicism, I fully expect to be in that 20% that gets no benefit, Though I am hopeful for something better....

Karen on 12 Jun 2010 6:54 PM:

so,, have you tried it? has it helped you???

Michael S. Kaplan on 13 Jun 2010 9:54 AM:

I am in the process of trying it... more on my results within a month or two!

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referenced by

2010/12/19 One of the cool uses of 4-AP (the main drug in Ampyra) is to give birds seizures. Well not cool, but....

2010/06/19 They got the $2000 from me, which is probably all they were looking for....

2010/05/30 Not everyone wants me to do The Right Thing™ + Ampyra update/irony...

2010/05/02 MS Update (aka I [still] have a heart)

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