Clinical trial of Ceftriaxone

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Degenhardt

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I am thinking about praticipating in the clinical trial
of Ceftriaxone. Is any one on this forum participating?
Is the port uncomfortable? I do not have a gallbladder
anymore. I hear that is a plus.
Has anyone experienced negative or positive results?
Thanks for helping me.
Degenhardt
 

joelc

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If you look at the bottom of this page there are some more threads listed that talk about this.
 

serenade

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I have been in the trial 1 year I think it is great with slowing progression. The hickman cath is not an issue other than you cant get it wet.
 

Degenhardt

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Thank you for the info above. I am glad the hickman
cath is not a big problem.
I am going to make my final decision by Wednesday.
Knowing that you think it is great with slowing progression
is hopeful to me. God bless you.
 

thistlegal

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My common law spouse has been in the trial for a couple of months now. The inital incertion of the catheter was uncomfortable for him as he could feel it when he turned his head and swallowed. He has gotten used to it and is not in any pain. As the caregiver that gives him the drug it can be time consuming, and takes some getting used to, in fitting it into your routine. Danny says he has the easy part, all he has to do is sit there. I can give it to him while he sleeps! Danny did develope gallstones even though he was on the secondary medication(pill) to prevent them. The doctor has cut down his dose to once a day till we see her on Thursday. We haven't noticed any improvement other than the twitching seems to have slowed down. He is still getting worse rapidly.

Hope this helps
 

fvwright

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I've been participating in the Ceftriaxone trial for 13 months. I also 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". 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 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 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.
Frank
 
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