I've been participating in the Ceftriaxone trial for 13 months. I developed "sludge" in my gallbladder as a side effect of taking the drug. I was prescribed Usordial to combat that. Several sonograms confirmed that the sludge was at least not getting worse. My dosage of ceftriaxone was reduced to twice a day for five days, and two days "off" to help reduce the gall bladder sludge. After 3 months of that I went back to 7 days a week taking the drug. When I started the trial in Oct 09, my only symptom was slurred speech. I'm the bulbar onset ALS type. At that time I had no difficulties eating or drinking. I could do 10 chinups, and run a 10k with no trouble. I was fairly muscular after regilar workouts at the Y for decades. I thought the drug could slow me enough to hold me till a proven treatent came along.
Now, a year later, I have lost 50 lbs, mostly muscle. I get all nourishment through a PEG tube. I communicate with written notes, but my right hand is about gone so the notes are harder and harder to write. I'm dropping out of the trial at the end of Dec. The pic line (Hickman catheter) was no trouble at all. I showered with mine all year with no trouble. You have to keep the medicine frozen til you're ready to use it, which can complicate vacation travel. We got pretty good at finding dry ice sellers in any large town we stayed in.
I don't know if my results are typical. I just felt that I was pretty symptom free when I started the trial, and was very disappointed to experience the disintegration in my body. That said, I was grateful to get into the trial. I intend to enroll in a second trial in 2011 (for tomaxifen +creatine) if I can meet the acceptance criteria. Clinical trials are the only hope we have. The science just isn't there yet.
Frank
