Old 11-19-2009, 08:40 PM #16 (permalink)
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Default Re: Ceftriaxone

Go well all that are trialling this med. We havent heard of it but will now research.
Will look for future entries any of you guys make re progress,Anastasia.
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Old 11-20-2009, 06:26 PM #17 (permalink)
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Started the ceftriaxone/placebo today. Hoping for the best!
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Old 11-20-2009, 11:02 PM #18 (permalink)
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Good luck with your treatment. Hopefully it slows down your progression. Erica
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Old 11-21-2009, 12:30 PM #19 (permalink)
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I had 2 doses of ceftriaxone/ placebo makes me feel strange from head to toe. Hope it is the med.
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Old 11-22-2009, 01:52 AM #20 (permalink)
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i hope so to ...best of luck
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Old 11-22-2009, 04:07 PM #21 (permalink)
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Started the ceftriaxone/placebo 2 days ago what I can say at this point is NUSEATED........YUCK
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Old 11-22-2009, 11:34 PM #22 (permalink)
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so sorry hope it is just an adjustment period
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Old 11-23-2009, 01:46 PM #23 (permalink)
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Default Re: Ceftriaxone

Hi All, How is everyone doing with it?
The cathedar is easy. I do feel like I have more energy.
Really can't tell if it has slowed the progression. I guess there really isn't anyway of knowing.
I do feel progression in my hands but that had started before the trial.

Nancy, not sure why they wouldn't let you participate. I am at very early stages. I still walk around and do everything for myself.
My symptoms are in my feet and now started in my hands.

Judy...how are you doing and I'm so glad it made your husband smile. I love to see my husband smile at this very difficult time.

Maura, you need to go through an ALS Clinic....my trail is completely covered by the ALS Association. Not a dime comes out of my pocket.
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Old 11-23-2009, 03:54 PM #24 (permalink)
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Momma, I have no limb involvement yet. It is only Bulbar. They want someone that progression can be measured on. I guess losing my ability to speak, eat, swallow and breathe isn't enough of a measurement. I don't get it. Hope it works for you.
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Old 11-24-2009, 08:22 AM #25 (permalink)
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Default Re: Ceftriaxone

Momma,
Well currently the ceftriaxone is on hold till they assess me on wed. They are worried I had an allergic reaction, I doubt it, just super nauseated. I put my transderm patch back on yesterday and all the nausea went away.
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Old 01-14-2010, 02:35 PM #26 (permalink)
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Judy, Hope all is well. Whats going on?

I'm doing ok with the trial. I don't seem to be having side effects.
I can't tell if it's helping. I guess no one will ever know.
I have more weakness in my hands and feet but maybe it would be worse if I wasn't doing the trial.

Hardest part of this disease has to be the unknown. No one can tell you anything or give you even the slightest bit of reassurement that your doing the right thing.

I think I'm having one of those days : (

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Old 01-14-2010, 06:57 PM #27 (permalink)
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Default Re: Ceftriaxone

Momma,
Cheer up! All is good! I also have weakness in my arms and feet. The cold really makes them worse, I don't know if you have any cold weather or not. But soak in a hot bath tub if you can and exercise them it helps. Also weakness is a side effect of the meds, I am hoping for a quick winter so I can sit in the sunshine again. I had my 2 month check up on wed and I am doing well with everything, they can't tell me anything specific because of the trial, but I do know about someone who has been on ceftriaxone for the last 3 years and the ceftriaxone has really really slowed down the progression of the als.

Keep the faith, stay positive, taking a chance with the ceftriaxone is better than to have no chance at all. It's ok to have one of those days we all have them. Only you know if you are doing the right thing! But people who know me are inspired by my total positive attitude toward the trial, my life, and dealing with als. I do not know what my future holds but I do know that I will not waste my time or energy being sad over something I can not control. I plan to live life the best that I can, and pray that the ceftriaxone will make a difference for all of us.

Hang in there momma
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