We are planning to ask our neuro on Monday to prescribe Ceftriaxone for my husband, rather than enroll in the trial and risk getting a placebo. This treatment is intriguing to us and we are keen to try it.
Has anybody actually taken Ceftriaxone and what was the response?
Kelly,
We asked our neuro about it, too. The phase III trial was supposed to start in January, now they're saying HOPEFULLY it will be mid-May. Like you, we don't want to be a placebo. How is she going to prescribe it? And, I can't find any info about what the results actually ARE! Have you heard of someone having positive results?
I have tried Ceftriaxone but I was allergic to it, so I tried Claforan for a year. Sorry to say that it didn't affect my ALS progression, I have a slow onset ALS. I didn't improve on it!
Patsy
just thought I'd chime in. My husband did Ceftriaxone for 6 months. Didn't do anything. It may have caused a few lasting side effects. Nothing serious. He was on one dose a day, the amount was slightly less than the trial suggests. His progression rate stayed the same. Energy levels were pretty low. Although he has been off Ceft for about a month and his energy levels went even lower within a few days of stopping. All I can say is that there was no change in the rate of progression.
This is very helpful information. My husband is trying to decide if he wants to try it. I will pass this information along to him, so he can make an informed decision.
I'm sorry to hear that it didn't work for your husbands. We were pretty hopeful that this might help. One day there has to be a break through!
They offered it to me. They want to use a heart catheter to administer the drug. If it doesn't help. Theres no need for me to go through it. Thanks for the info!
I am expected to take part in the Ceftriaxone trial soon. However the odds are 67% you get the med 33% the placebo. Given daily by IV injection, not thrill by the description of having the IV port inserted but my doctor is excited and states it has been showing promising outcomes.
Has anyone tried Ceftriaxone? 
