Monday, June 8, 2009


Now that I've got probable ALS, my neurologist put me on a little something called Rilutek®. That's the brand name for a drug called Riluzole - the only thing proven to help people with ALS. It's a glutamine blocker, whatever that is. I would have named it Glutanon, or Blockamine, or Glutanot, or Blockoglutatrol - but they didn't ask me.

I take two 50mg pills per day. Each pill is the size of a TicTac. A one month supply costs over $1000 dollars. That's right, 60 pills costs more than the last bike I bought. Thankfully, my insurance picks up most of that. I asked my doctor why it costs so much. She said, "Because it can." Hey Sanofi-Aventis - screw you.

I asked the nurse how I'd know if it was working. She said "You won't." Wow. For a grand it should at the very least get me high as a kite. Also, the pills should be the size of hockey pucks, shoot rainbows and summon unicorns. I'm just saying, if I buy $1,000 worth of drugs I better be trippin' balls for days. Or be able to sell said drugs to hippies.

Here's were things get funny; the side effects.

I love, LOVE, when drug commercial narrators rattle off the possible side effects. "Try AllergyNo! Side effects may include dry mouth, constipation, explosive diarrhea, blindness, spontaneous combustion, double explosive diarrhea, cough and loss of toes. Ask your doctor about AllergyNo! today."

The Rilutek side effects are (this is verbatim from their web site); "weakness, nausea, lung function decrease, a mild liver disorder that is typically temporary, runny nose and headache."

The first side effect is ''weakness". Weakness. If you have ALS, you're already weak! You've been weak for over a year! The treatment may make you weaker! Wow! Fun! Wow!

I can verify, weakness is the number one side effect. After the first time I took Rilutek, I felt weak. By felt weak, I mean I struggled to lift a 6-pack of beer on to the counter at the liquor store. When I got home, I struggled to walk from the garage to the house. The weakness wore off after an hour or two - much like Han Solo's strength returned after being freed from carbonite.

I don't know what to think when the treatment exacerbates the symptoms. My gut reaction is, drug researchers are idiots.

What have they done for me? I mean, they didn't even get me high.

I should give the Rilutek crew a break since they don't make an E.D. drug. You can't turn on the TV without seeing an ad for Viagra, Levitra or Cialis. Boner pills are readily available, but the one thing that can extend the lifespan of someone with the only disease that is 100% fatal 100% of the time isn't advertised and costs one grand per month.

So, makers of Viagra, Levitra or Cialis - here's your next focus group study. I'm literally doing your jobs for you.

Assemble a bunch of guys with ALS. Ask them if they'd rather;
1) Live.
2) Die with a boner.

Plan your next R&D/Marketing cycle accordingly.

I'm not positive, but I'm guessing guys with ALS would rather see those companies spend their cash on saving lives than doling out stiffies. People are dying.

Where are your prorities? No one ever died from not having a hard-on.

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