Ceftriaxone

Momma · 10-27-2009, 11:55 AM

Hi all,
I hope you are all doing as well as you can be. I wanted you all to know that I started the study using Ceftriaxone two weeks ago. I had a Hickman cathedar put in my chest and I have the drug administered twice a day. At first I was reluctant because having 5 kids, I wasn't sure how much of a life style change it would be. But, as it turns out, this is easy. I'm so glad I did it. It's still too early to tell if it's making any difference or not for me, but I will tell you this, it has helped me tremendously in my attitude and feeling like I'm fighting and not just waiting around for the next thing to fail. I will keep you all posted on my progress and I promise to be honest with you all as to not raise any false hope. That's the last thing we all need...right.

Let's fight this together. There is strength in numbers : )

If you have any questions I would be happy to answer any of them.

Stay Positive and hold on tight to the ones you love.

Momma

John1 · 10-27-2009, 01:02 PM

Thank you Momma and good for you for going ahead with the trial. You're helping us all.

I look forward to you updates with crossed fingers.

John

serenade · 10-27-2009, 02:06 PM

Fantastic news! I go tomorrow about the trail! Your post made me feel better! My hubby says you have "the right attitude" the post also made him smile

Judy

tdamess · 10-27-2009, 05:11 PM

i thank you also . best of luck

beverly rees · 10-27-2009, 06:58 PM

Dear Momma,
Thank you so much for your willingness to do this study. You are helping all of us and will keep you in our prayers that this treatment will be successful. Bev

serenade · 10-28-2009, 01:09 PM

I went to my appointment at the ALS clinic for the ceftriaxone trial today. I got to see the Hickman catheter on a plastic dummy and was given a cd on how to use IV port and keep it clean. Next step is testing, training and placement of the Hickman, if all goes well I will start the trial. Very frustrating always waiting for something to happen only to get scheduled for another appointment. aghhhh!#*^#@*

h37skipper · 10-29-2009, 08:57 PM

Thanks "Momma". Wife Maura just received the protocol for doing ceftriaxone "off-label". That is our PCP and neuroligist will administer the drug outside of the trial. Our hope is that we can slow or stop the progression before a tracheostomy/ventilator becomes a necessity. Your experience gives Maura more confidence in the decision. Now to find a way to pay for it.

Please keep us posted about issues with all the daily requirements of administering the drug. Our prayers are with all of yo.

hopingforcure · 10-29-2009, 09:13 PM

Wow great news Maura is such a pretty name. Keep us posted, we will all be sending all our support your way.

serenade · 10-30-2009, 10:28 AM

Just got the call going for the Ceftriaxone screening on tuesday. 2-3 more weeks for the Hickman cath and to start the trial. Woo hoo! I am excited!!

Good luck Maura and Momma keep us posted on your progress!

Judy

t34gib · 10-30-2009, 12:07 PM

I wanted to go into the study but was denied because "I am not bad enough" Only Bulbar symptoms. Thank you for doing the trial. I know it is invasive and very difficult for some people to do. I will do whatever I can do stop this disease from slamming anyone else.
NancyS

serenade · 10-30-2009, 05:28 PM

Nancy,

I have heard that before " I am not bad enough" maybe these trials would be more effective in the earlier stages. I am sorry they won't accept you, I would try somewhere else and see who else is doing it! I am going to give it my best shot and pray I get the Ceftriaxone, I would love to see it stop this dreaded ALS in it's tracks and change all of our lives! But is hasn't been done yet! but maybe... "THIS IS IT" sounds like a title for a movie. lol

Big Mike · 10-30-2009, 10:36 PM

Don't forget that the KNS drug is going into phase 3 next year. A LOT of promise circulating around that drug right now!

lmaire · 11-16-2009, 04:03 PM

Besides having ALS, my husband was diagnosed with Lyme disease (had to get this diagnosis for Ceftriaxone). He had a port put in and we administered the IV at home. Therefore, we were able to get the ceftriaxone thru our insurance he was on it for a minimum of about two years. We did not see any huge change, but, there is a chance it may have prolonged his life. He had the disease for 5 years until passing away in January. I am glad that finally there are trials with this med we had to go to great lengths to get it. We traveled to Colorado from Illinois once a year for a check up with the Dr. that prescribed. We were able to have the meds shipped to us at a discounted rate from Contract Pharmacy in Colorado Springs. I hope this works well for you and others in the future.

Jdurf1 · 11-19-2009, 12:32 PM

I'm Jim. Started the Cef trial 1 month ago. Hard to tell if the progression has slowed down but I do feel better and no more bedtime at 7:30. One caution is to not forget to take your ursodiol, I grew some gallstones so pulling back the dosage a little until they dissolve.

serenade · 11-19-2009, 04:57 PM

Just returned from a day at the hospital, had the hickman cath put in, and many hours of training for myself and my hubby. Tomorrow will be the first dose of ceftriaxone or placebo.