Friday, February 11, 2005

D+3: Bilirubin!

The Aventis site warnings on riluzole say:

"Baseline elevations of several LFTs (especially elevated bilirubin) should preclude the use of RILUTEK."

I have elevated bilirubin, and my blood tests have shown it since my troubles began. The people at the ALS clinic had my blood work results when they prescribed this drug to me.

Before I read the above warning, I did a little experiment...

My breathing score was 4750 two days ago, and yesterday, the morning I skipped the riluzole, it was 4500-4600. So I wondered if maybe the absence of the drug was the reason, and at 3:30 PM I took 100 mg (a full daily dose, usually spread to morning and evening), to see if my score improved.

You could hypothesize that the shortness of breath was anxiety from drug separation. Again, I wouldn't argue with you, because that's a perfectly valid argument. I just don't personally feel that it's true.

The dose did not improve my score at all, so we can rule out lack of riluzole as the cause. OK, if you're Aventis, you can't, but I can, for my purposes.

The blood drawn on December 31, 2003 showed this level of bilirubin:

bilirubin, total: 2.3, normal: 0.0-1.5 mg/dL

The blood drawn on December 19, 2004 showed this level:

bilirubin: 4.5 MG/DL, normal: 0.2-1.5

And, to give props to non-Western medicine where props may be due, when the (English-fluent) new acupuncturist was holding my wrist in that weird way, taking my different-kind-of-pulse (not the normal one), she said I had trouble in my liver. She's never seen my blood work. So maybe it was a lucky guess, or maybe she hit the freakin' nail on the freakin' head.

In other news, I'm pleased that in a short period of time, I organized the acupuncture, probiotics, glyconutrients, ceftriaxone, and the hand dynamometer. And yesterday I finally, at last, at last, filed the forms for Social Security benefits.

Today's metrics are inhale volume 4700 mL, up 100 from yesterday, and left grip 47 pounds, down three pounds from yesterday (ALife: 45, 45, 47). By the way, right grip is at 91 pounds, which is up six from yesterday, yet down two from the day we started the ceftriaxone, and down nine from 1/10/05. ALS has had a much worse effect on the left side of my body, so I assume the variation due to therapy will be greater there.

Good news: No neck muscle twitching since Friday Feb. 4, two days into the ceftriaxone therapy.
Weblog Commenting and Trackback by