Still on ceftriaxone?

The ceftriaxone trial seems to have dropped off the radar these days. My husband has been on this trial for 20 months now. continues to weaken slowly. Got a scooter the other day, being fitted for a power chair now. Anyone on this trial notice any improvements? My husband convinced he is on placebo. Won't find out till the end of this year. Stupid wife thats me went on you tube reading als documentaries. My heart is breaking to watch my hero deteriorate. So many heros out there. Many with small children. Our only saving grace our children are grown. Any input from trial patients?

Ipcarr, plm has a thread about this. I dropped out on 20 June 2012 at ten months. The side effects just got to be too much to bear. I have continued to decline despite having myriad side effects that would indicate that I was receiving the antibiotic.

I have been in the ceftriaxone trial for 16 months. I have had galbladder sludge so i beleive i am on the drug. Within the first two weeks my cramping almost stopped. I still get an occaisional cramp but the severity and duration are much less. The disease progression has not stopped as i continue to get weaker and less stable. Hindsight tells me that my first symptoms were over 5 years ago. It started with a very slight weakness in my right hand. My diagnoises took almost 3 years.

Randy

will be in muncie in two weeks to visit friends. did the ck-357, very successful and now six months into rasagiline, it may be slowing progression, but i do things outside the box so what is working. the lady at the clinic says who cares as long as it does. still walk, talk, eat, breath and drive on my own. been very blessed with slow progression

From what folks are hearing, the Ceft trial is a bust. They are stopping it now, and will be removing everyone's PIC lines.

NEALS issued a statement about ending the Ceftriaxone Trial.
Check their website.

Larry had his final drug study visit yesterday. Then went down and had the hickman cathater taken out. All went well, just a long visit. Looking for another trial to jump on. Our neuro said their are some in the works and he will let us know ASAP. Hope to get on another. Cytokenetics I think? Has anyone heard about this one? Hope the criteria is not too stiff. My husband is my hero. Such a strong guy. Have to hope something else will be the cure. Pam

hi larry, ref cytokenetics. i was in part a phase II of this drug last year. one of 4 pals at univ of kns med cntr, blind test, placebo, 3 levels of medicine. had excellent results, just learned i had highest dose level. left hand squeese went from 11lbs to 19lbs, right hand 43lbs to 51.5lbs. legs and arms unknown because i could out pull the tester so we were only measuring her strenght, (bummer) after test no more medicine (asked if there was black market medicine available) nope. in few short months left hand 3lbs, right hand 31lbs. if the medicine was available where would i be today. unknown but bet stronger than i am now. this sure was a sticking point at the national als conference. fda must give us some slack as the window of opportunity is very small. do the ck-357 trial if possibly. side effects minimal, little dizzy