Ceftriaxone

[Barbie4]

Hello:

I was wondering if anyone is currently or has been on a Ceftriaxone drug trial and has an comments good or bad about it.

My friend is considering it and I was hoping to give her some feedback on whether it is worth it or not, side effects, etc.

I understand that it is an antibiotic used for Lyme disease and is possibly effective in chemical recycling in the nervous system.

Thanks and hello to everyone!!:mrgreen:

Barbie :)

[liz]

Barbie -

My understanding is that it is going into Stage III trials - more participants being sought, some will get the med and others the placebo. What I remember reading was that you have to agree to have a central venous catheter placed, that there must be a caregiver in the home to supervise meds, and that there is a fair amount of travel to/from test centers involved. There's more and I'm sure ALS Center or the MDA could give you a fact sheet.

Liz

[candd]

Barbie, I noticed that you wrote this in January. I just became a member in the last two weeks. Saw the posting for ceftriaxone...I am currently in the research study out of Washington University in St. Louis. If you are still wondering drop me a line and I'll tell you everything I know.

[Beebe]

Hi Barb, Jack is taking Ceftriaxone started about a month ago. No side effects. Is Gail in a trial? I'll write more later, it's really late or early.lol Fondly, Beebe

[Omar]

Hey guys,

I have been on Ceftriaxone (ROCEPHIN) through the I.V. for 3 days in the hospitals
4g daily, 2g in the morning and 2g in the evening and right after I have been (and still)
on Vibramycin 100 mg 2 pills daily with Coenzyme and Magnesium and I will be again on Ceftriaxone right after the Vibramycin period.
So far I haven't notice any side effects, and my progression is still as it was before starting the antibiotics, a slow progression.

N.B.: I am not taking Rilutek and not planning to.

Omar

[CindyM]

Hi Omar- interesting that you don't plan of taking Rilutek. I know there are a ffew PALS who don't take it. Care to share your reasons? Cindy

[Omar]

Hey Cindy,

Well if it was really a cure or an ALS medicine I would have taken it into consideration but I feel it more like a side effects medicine than a cure. I have searched and read a lot about it and it seems that it may delay the ALS progression for few months after taking it for quite a long period. I have always had a healthy life style, I don't drink, I don't smoke and I work out regularly so as long as I am going to die anyway with or without Rilutek, I would chose to die without it. Honestly I have been on Rilutek for a month and it was also very hard for me to follow its schedule like taking it at the same time and every 12 hours so I ended up lots of time missing it. Now I feel much free without it and my neurologist also has supported me.

N.B.: I feel it more like a commercial product than a medicine.
I don't know.

Omar

[Barbie4]

Thank you for your offer of info on Ceftriaxone. Gail was considering going on a trial back in January, but I do not think she will bother doing it now, as it will require travelling to the States. Interesting that some of you are on it. I hope it works and if you have info on it of its success, please share it with us. I would love to hear a success story.

thanks and hello to all.

Barbie :)

[kman543210]

I have not been diagnosed w/ ALS (or anything yet), but I do have experience with Ceftriaxone. I started Ceftriaxone in Dec 2006 (2g/day) and had to have a PICC line put in. This is a catheter put in the arm. This might seem extreme for some, but I had a central venous catheter when I was younger for 18 months for chemotherapy. I didn't notice any side-effects, but you have to take a good probiotic and have your blood counts and other organs monitored. It's expensive too, $95 a day for me.

[KateO]

Any others want to share their experience with Cep(sp?)? I'm considering it..but, need more feedback from ALS patients currently taking it. How long does it take to put in the daily meds into the IV? Does the IV site get in the way? Is it easy to cover with clothes? Are the meds easily transportable (eg: can I easily travel with them when I take 5-6 day trips).

Thanks!

[Omar]

Hey Kate,
I had been on Ceftriaxone for a 3 days trial in the hospital, it takes minutes to put into the IV and they did it twice daily morning and evening, as for the IV it doesn't really get into the way, I even used to take it with me and have a shower and it is not that practical to dress and undress but it is not that difficult so u will get used to it. But u can also have the trial home if u don't like hospitals, u only need a nurse twice daily to put it into the IV. I have also heard of the pills but have not tried them.
take care

Omar

[ilgal]

I am not taking it yet but have all the written info and went thru screening and expect I'll start soon so I'll tell you what I know.

They are still enrolling for Stage 1 & 2. 1/3 will get placebo, other 2/3 will get 1 of 2 different doses of ceftriaxone (double blind).

Screening involves thorough health history, blood tests, physical exam, 24-hr urine collection, abdominal ultrasound, strength testing of arms and legs, vital capacity test of breathing, quality of life and functional rating questionnaires. The ultrasound revealed I had gallstones so I had to have my gall bladder removed. Then because since childhood I've been told I had penicillin allergy and that's an exclusion factor so I had allergy screening last week. No allergy, so now I have to go back and have all the other screenings re-done since over 30 days.

Once approved a central venous catheter will be inserted in the chest. My husband & I have already watched a dvd about catheter care. You do have to have an able and willing caregiver. Prepping and giving the study med twice a day looks like it will take about 30 min. each time. You can never take a bath or swim but can shower. Scoop neck clothing or anything tight would show the catheter, but I don't think it will be visible under a button up comfortable fitting blouse.

You go back once a week for the first 2 weeks after getting catheter and beginning the med, then every 4 weeks. At the 1st weekly visit you have to have 2 spinal taps (this is the only part that scares me! Say a little prayer...)

The ceftriaxone has to be kept frozen until given. They told me that if you have to be off it for a few days to travel, etc. that's okay.

Hope this helps. I'll be glad to keep you posted as I go through this if you want to know. Let me know if your friend opts to do the study. We can compare notes.

[ilgal]

Kate,
Oops! I had read the earlier post about someone's friend considering it and when replying forgot that you were considering if yourself. Sorry.

When were you dx and what are you experiencing now? I would love to compare notes if we both do the ceftriaxone. Have you considered any other trials? My husband read about the diaphram stimulation one at Cleveland Clinic and thinks I should find out about that. But it's pretty far from home and I don't know if one can participate in more than one trial.

Hope to hear back from you and good luck.

[KateO]

Thanks to you both for the responses! Hmmm..I really do need more info before I make a decision. I LOVE to swim, so I do not think I'd be willing to give that up. And, no baths? Hmmm..it's life's little pleasures that count. And, baths and swimming are two big "little" pleasures for me.


Ilgal - I am 47, diagnosed this past April. I use a walker, primary symptom is very spastic legs, clonus and foot drop on right foot. My progression has been slow. I was very active physically before this. Big skiier, mountain bike rider, runner, hiker, lake swimmer. So - if I would have to give up swimming to do the Ceft. meds I really don't think I would do it. It's about last thing I can still do physically.

I'm not involved in any other clinical trials. Thought about it and decided against it. I live in Montana. Closes hospital for ALS trials is Salt Lake City. I'm just not interested in spending the time and money to go SLC all the time. I'd rather save my money and go to Hopkins periodically. I know I'm not interested in being part of any clinical trial that involves placebo. I understand why they have to structure the trials that way - but, man oh man. Why would I want to go to the time and expense for a placebo? Nope.

I am on Riluzole. I didn't even want to do that at first. I HATE taking all the pills. I take (-10 Baclofen pills a day because I am so spastic.

Emotionally, I am doing better as time goes on. Just last week I decided to "go public" with my ALS diagnosis. It was a big step for me. But, the burden of keeping that secret was just getting to be too much for me. I am still working. My work involves a lot of travel. Of course, that's not always easy...but, I am just thrilled to be able to still do it. I know I won't always be able to travel, so am just reveling in this opportunity.

Okay. Your turn? When were you both diagnosed and what are your symptoms?

Take care - everyone,
Maureen

[catcherpride]

I started the study 3 weeks ago and no issues as of now. The Hickman cath is not much of an issue as long as you don't get it soaked. The second week all day stay in the hospital was very tiring. The 2 LP's were not that bad, but the every hour blood draws were not as much fun.

I am very lucky that my wife is a RN. The infusion is a piece of cake since she is so good at doing it. The infusion takes 22 minutes and I keep doing my normal things while it runs. My 8 year old has even administered my meds with my wife helping.

I look at it this way - if anything helps me watch my girls grow up I am doing it.

Michael

[Jamiet]

I am on Ceftriaxone (Rocephin), 2mg 2x's per day.

I don't know who said this, but i think Kman.... I get mine for $70 per day. Who are you ordering it from. I don't get the medical supplies, only the meds, saline and heparin.

next... I am on the ceft. 4 days on and 3 days off. I don't have the cathether, i have a mediport. From what i know, the mediport is the safest and best way to go if you don't have to be injected all 7 days. i do Monday thru Thursday, fri - sunday, i can do anything i want. As a matter of fact, even with the needle in, i can pretty much do what i want.

I would think a catheter is dangerous, but the docs are supposed to know whay they are doing right??lol

I am not dx with ALS, think i could have lyme, so i asked for the IV ceftriaxone, i knew it was in clinical trials and i knew it was an effective treatement for lyme. I'll kill two birds with one stone here huh.

So, in a nutshell, i find it very easy. I now, after 4 weeks do everything myself. I had home health for two days and my friend who is an RN "stuck" the needle a few times. I know do it all myself, from infusing the IV 2x's per day, to flushing, to pulling the needle out and i even put it in the mediport myself sunday night. FYI - i change the needle once per week, and i change the dressing twice per week.

I actually find it all really easy now, it takes all of 10 mintues to get the 2 gms in, that includes Saline & Heparin.

If you use this, remember the "SASH" method. Saline Antibiotics Saline Heparin.

You all know, it's funny they are finding out ceftriaxone is beneficial to ALS.....and funny enough it's the best treatement for lyme.....???? Do you think there is possibly some connection.

Anyway, please feel free to ask all the questions you want, i will help where i can.

Rgds,

Jamie

[ilgal]

Jamie,
Good thing about the clinical trial is no cost for meds, supplies, screenings, etc.

Michael,
Thanks for sharing your info. It makes me feel a little better about being able to handle it. I am having quite a bit of problems using my hands so my husband may have to do all the connections. You said you continue to do your usual stuff while the med is infusing. Can you get up and move around? I thought I'd have to sit still which would make the a.m. dose a pain as I'm trying to get ready to go to work. Please keep us posted on how it goes. The idea of getting the placebo is a bummer but at least it feels good to be doing something.

Kate,
Thanks for sharing your symptoms, etc. I can understand your not wanting to give up your pleasures of swimming and bathing. I've always been a shower gal myself, but I was sure to enjoy the hot tub when we went on a cruise last month.
I am 58 years old and still working. Symptoms started as slurred speech then right hand weakness. First dx as stroke. Dx ALS in July 07. Speech getting worse, but no problem swallowing. Rt hand and arm weak and atrophied and left is following suit but seems so strong by comparison. Fascilations in arms, tongue, lips, legs, and back from time to time, but not bad. Was feeling very good about leg strength, but in last mo. have had 4 falls and notice difficulty climbing stairs. Fri. I fell on our patio and had to get stitches in my forehead. One side of my face looks like a Halloween mask with an artistic blend of red, purple, yellow, and grey. At least tis the season! No clonus (I actually had to look up what that is) or spasticity. Occasional cramps in hand.

Overall I feel like I'm in pretty good shape so if ceftriaxone could stop this in its tracks I could live with the present me. The thought of the progression scares me as I guess it does all of us. I admire all the brave people who write on this forum and are so helpful to others in spite of what they are going through themselves. Bless you all and bless all caregivers!

Your Illinois friend

[KateO]

I too want to thank everyone for sharing their experiences and thoughts about this drug. I did have a long talk with my doctor last night about it. I've decided against it. I just absolutely love swimming, soaking in natural hot springs (we've got a few around the area) and long, long baths! If I was convinced it would definitely extend my life I'd do it. However, as we all know, the only drug they know really works is Rilutek.

There are so many different decisions to make about drugs, lifestyle choices and interventions with this difficult journey of ALS. I respect everyone's wishes to make their own decisions. I wish all of you the very best.

Kate

[Omar]

Hey Kate,
I was diagnosed in August 2006 and my symptoms were so many like slurred speech, laughing, weakness in my right hand and legs. By the way I adore swimming too, I used to swim 4 times per week and I really miss it, I haven't been swimming for a year now, but now I am planning again to swim, so I am looking for a pool around, and my 2 new speedos are ready :)
By the way Jamie, I am curious about your Ceftriaxone trial, for how long you are going to be on it? Actually I have been on Ceftriaxone for 3 days only (4 gr daily) then I stopped went home and been on Vibramycin for 2 months (2 pills daily) in order to restart afterward another Ceftriaxone trial, but then I didn't cause I left my country. So I am curious for how long your Neurologist wants you to be on it.

Thank you and take care


omar