Methylcobalamin - research promising in slowing progression

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Here's the scoop on B-12. Oral ingestion of it is useless. However 25mg IM has shown some promiss.

METHYLCOBALAMIN UPDATE

We first became aware of methylcobalamin, a form of vitamin B12, for use with ALS several years ago. Recently, cases have emerged where methylcobalamin is apparently being used successfully for the relief of certain ALS symptoms at proper dosage as an intramuscular injectable. Because it appears to provide noticeable support toward reducing limb weakness and atrophy for persons with ALS, it's time to share this important information with you.
EARLY USAGE ERRORS

In the mid-1990's, a respected laboratory at the University of Kyoto (Japan) conducted a very impressive rat study on the use of high dosage methylcobalamin (a form of Vitamin B12) for minimizing muscle wasting and atrophy in limbs as is usually attendant to ALS. They followed that up with a small, but carefully controlled and monitored human study and obtained similar results with ALS patients. In the years since, a number of persons with ALS have tried Vitamin B12, but usually without any impact. WHY? In examining many of the individual users' experiences, we found some unfortunate lapses:

a) Use of cobalamin (a different B12 isomer with reduced bio-availability) instead of methylcobalamin
b) oral ingestion or sub-lingual ingestion, which provides less bio-availability, instead of injectable methylcobalamin
c) subcutaneous injection instead of intramuscular injection which is more bio-available
d) substantially lower dosage than originally determined as efficacious by the original and subsequent Japanese studies
e) injected once a week instead of the recommended daily injection
f) not used for a sufficient test period to determine its efficacy which should be a one-month minimum and for up to three months
g) not continuing its usage indefinitely after testing as should be done for maximum benefit.
POSITIVE INDICATIONS

The following information includes two different study abstracts conducted in Japan 10 years apart with encouraging results.

Muscle Nerve Journal
December 1998
Effect of ultrahigh-dose methylcobalamin on compound muscle action potentials in amyotrophic lateral sclerosis: a double-blind controlled study.

Kaji R, Kodama M, Imamura A, Hashida T, Kohara N, Ishizu M, Inui K, Kimura J. Department of Neurology, Kyoto University School of Medicine, Japan.

Abstract
To develop a symptomatic treatment for amyotrophic lateral sclerosis, we compared the effects of ultrahigh-dose and low-dose (25 and 0.5 mg/day, intramuscularly, for 14 days) methylcobalamin on averaged compound muscle action potential amplitudes (CMAPs) in a double-blind trial. No significant changes in CMAP amplitude were found in 12 patients who had the low-dose treatment at either 2 or 4 weeks after start of treatment. By contrast, 12 patients assigned to the ultrahigh-dose group demonstrated a significant increase at 4 weeks. This method may provide a clinically useful measure to improve or retard muscle wasting, if a larger extended trial fulfills its promise.

Brain Nerve Journal
October 2007
Izumi Y, Kaji R, .Department of Clinical Neuroscience, Institute of Health Bioscience, The University of Tokushima, Graduate School, 50-1 Kuramoto-cho, Tokushima 770-8503, Japan.

Abstract
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder affecting both upper and lower motor neurons. Weakness may begin in the legs, hands, proximal arms, or pharynx. The course is relentless and progressive without remissions, relapses, or even stable plateaus. There is no effective drug therapy for ALS, although riluzole has been shown to prolong life in sufferers, without tracheostomy. A vitamin B12 analog, methylcobalamin, has a protective effect on cultured cortical neurons against glutamate-induced cytotoxicity. We have shown the ultra-high-dose methylcobalamin (25 mg/day i.m.) slows down the progressive reduction of the CMAP (compound muscle action potential) amplitudes in ALS in the short term (4 weeks). The latencies of SSR (sympathetic skin response) were shorter after treatment (50 mg/day i.v., 2 weeks). In the long-term effect of methylcobalamin (50 mg/day i.m., twice a week), the survival time (or the period to become respirator-bound) was significantly longer in the treated group than in the untreated. Larger-scale randomized double blind trial was started in Japan in order to evaluate the long-term efficacy and the safety of ultra-high-dose methylcobalamin for sporadic or familial cases of ALS.

The Wikipedia definition can be found at the Methylcobalamin link.
Thirty scientific paper Abstracts on Methylcobalamin from the years 1984-2000 discuss the apparent benefits of methylcobalamin for ALS, MS, diabetic neuropathy and other neurodegenerative disorders and conditions.
CONSIDERATIONS

If you decide to have daily intramuscular injections of 25 mg/day of methylcobalamin, please do consider the following: Avoid alcohol and smoking; If antibiotics are needed methylcobalamin should be temporarily discontinued; Do not use if you are diabetic. Discuss in detail with your physician before beginning this protocol.
METHYLCOBALAMIN AVAILABILITY

Eisai Pharmaceutical, based in Japan, is the world's 25th largest pharmaceutical company and the inventor/manufacturer of Aricept, the premier Alzheimer's disease medication since its inception in 1997. Eisai is the most notable, and accessible, manufacturer of injectable methylcobalamin. Their study notation on the long-term (2007-2014) clinical trial of methylcobalamin for those with ALS being conducted in Japan can be found at Clinical Trials.Gov

The NIH (National Institutes of Health) identifies methylcobalamin as one of only four Phase III pharmaceuticals currently in trial for ALS (as of April, 2010). Prior safety and dosage tests of ultra-high dosage IM injectable methylcobalamin demonstrated benefit after approximately 30 days.
 
Let me also add...I have not tried massive doses of b12...yet, and may not. I'm still researching it.
I did find some costs tough. One pharmacy charges almost $1000 monthly. Another $800.
 
I want to state that I have not yet tried B-12 shots. I did find out that it costs between $800-$1,020 monthly for 50 mg daily.
 
my son is on it and he can flex the for arm muscle again
 
Branch Chain Amino Acids are supposed to help with Atrophy......but you have to work your muscles too.....so, FYI . I'm trying them now. What I have read about Methylcobalamin has been that it will prolong survival 3-6 months.....but it just seems to me any form of vitamin B would help with Stimulating nerve growth(that is if the anterior horn cells are still funtioning normally at all)....nerves grow soooo
slow.B complex makes me sweat too much.Go figure that out.
 
I completed 30 days of meth'n b-12 IM injections of 10 mg daily. I am now on day 16 0f 15mg. No improvement or side effects yet. The plan is to bump it up but have to talk with my neuro soon.

Cost of 1 month of 10 mg was $166
 
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ClinicalTrials.gov lists a trial currently recruiting applicants at 50 study sites in Japan to investigate mecobalimin ( which is another name for methylcobalimin) as a treatment for ALS. I take 1000mcg 2x a day through my PEG tube. We buy the liquid form from the Vitamin Shoppe. I've found tablet for methylcobalimin at Amazon.
 
Citytom: Could you please update your experience on MethylB12 since you posted last 4 months ago? I would like to see additional information such as 1) Where you able to go for higher dosage, I suppose via IM since you indicated that the tablets don't work? 2. Do you see a regular Neuro or an ALS expert? 3. Was he (she) sympathetic to your request (I am sure he is since you indicated you are on it)? 4. Can U.S. citizen get this shot legally or perhaps you are a Canadian living in Florida? Does insurance covers it (not a big deal)? Perhaps your age range (if not too much to ask) since another poster says it helps her son and another talks of playing video game (both thus younger, I assume). I thought I will send a PM but the reply might be useful for others as well.
Fvwright: The trial is not new. It has been going on for a number of years in Japan and conducted by the same researchers.

TIA.
Grappling with the disease on a 24 year daughter (onset almost 2 years ago) trying to complete her M.D. degree under this condition (one more year to graduate). She has been a pure vegetarian since birth, played in tennis team for the high school, spent a year in Spain as a visiting undergraduate student, and 20 months in Caribbean Islands when the symptoms showed up. We would do anything to find a cure and hope that this might help given her young age etc.
 
i would like to hear more but think much higher dose is needed
 
I am now on 3rd month of 25 mg im. No perceived benefit. In fact my arms are weaker.

Ohgosh, i see dr perlmutter, als neuro in naples,fl. Blue cross pays partial cost. I am us citizen...all is legal. I am 64 yo.
 
Hello friends...

This is my first visit over here. I am new to here. First i would like to say hi to every member of this forum site...
 
Hi Sharon. Welcome.

AL.
 
How can anyone say that something is slowing progression. Everyone progress differently dont they.
 
How can anyone say that something is slowing progression. Everyone progress differently dont they.

some died in 4 months , others 20+ years but most are between 3 - 5 years and to me it will never be slow enough
 
With something like ALS, you would need a very large number of participants, and a placebo controlled study, to be able to prove a slowing in progression. My ms studies usually recruit about 1500 participants! So very large numbers indeed.

Aly
 
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