Old 07-02-2015, 09:05 AM #1 (permalink)
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Default B-12 Study

From the NEALS site:

"Ultra-high dose methylcobalamin (E0302) prolongs survival of ALS: Report of 7 years’ randomised double-blind, phase 3 clinical trial ".

I won't post the whole story but you might want to read the article on the site. Not sure if our docs would give us twice weekly injection of B-12 or not but it sure did sound promising and doesn't have to be FDA approved.

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Old 07-02-2015, 09:33 AM #2 (permalink)
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Default Re: B-12 Study

The US doctors seem to be,at best, lukewarm on this. The benefit apparently only showed if started within a year of symptom onset
My sister did high dose injections daily early in her disease. I don't feel as if it helped her. Her progression at that time was fast. It slowed down later a good amount of time after stoping b12. That said the injections are easy to give so you would just need someone willing to prescribe and a source. The standard b12 given in the US is a different form. I don't remember how my sister got hers. I know it was not easy
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Old 07-02-2015, 09:43 AM #3 (permalink)
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Default Re: B-12 Study

I should add that as we know ALS is many different diseases my sister is, of course, c9 FALS as am I. What helps/ does not help us may be different than those of you with different forms of ALS
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Old 07-02-2015, 11:07 AM #4 (permalink)
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Default Re: B-12 Study

Like Nikki, we have FALS (ours is TARDBP). I seem to recall my Mom having B-12 injections at least some of the time she was progressing but I do not remember it being of any help with the ALS. Oh, that it could be that simple.
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Old 07-02-2015, 11:54 AM #5 (permalink)
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Default Re: B-12 Study

Well Fudge! Thought it might at least be something to try since the study group was so large (over 300 participants). I wish NEALS wouldn't even put this stuff on their website if there is no overwhelming evidence that it helps.

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Old 07-02-2015, 12:30 PM #6 (permalink)
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Default Re: B-12 Study

I think what they said at the MGH symposium in May was that they were trying to get more information from the study doctors. I have clinic in a couple of weeks. If they say anything about this I will let you know
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Old 07-02-2015, 10:30 PM #7 (permalink)
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Default Re: B-12 Study

Thank you so much Nikki.

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Old 07-03-2015, 12:39 AM #8 (permalink)
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Default Re: B-12 Study

They've been doing studies in Japan for years. I gave Larry a chewable daily methylcobalamin before it got burdensome; he was anemic anyway due to a titanium valve that liked to eat up his RBCs. Can't say if it had any effect. The Bs like to be balanced somewhat so he took a B complex also.
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Old 07-03-2015, 09:33 AM #9 (permalink)
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Default Re: B-12 Study

i take b-1 and b-12 orally daily and have no idea if it is having any effect! does b-12 have to be injected to be effective? chally
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Old 07-03-2015, 11:39 AM #10 (permalink)
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Default Re: B-12 Study

From what I read, they gave patients injections of B-12 of 25-50 mg twice per week. The oral supplement that we buy are only about 2,000 mcgs, which is much, much less than mgs.

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Old 07-03-2015, 04:41 PM #11 (permalink)
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Default Re: B-12 Study

We used 5000mcg. I doubt an oral form is going to change the course of the disease, as the dose is much less and the form less bioavailable, but I tend to think in terms of combinations and symptoms anyway. I don't know that I would use B1 unopposed, though.
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Old 07-03-2015, 04:54 PM #12 (permalink)
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Default Re: B-12 Study

Note that this study and the earlier Phase II specifically used methylcobalamin. Not just 'any' B12.
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Old 07-03-2015, 08:39 PM #13 (permalink)
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Default Re: B-12 Study

Yes, that's the form we used and that everyone should, if you are going to try it -- the inferior one (cyanocobalamin) is most often used in vitamin complexes, though. I believe it is cheaper to make.
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Old 07-04-2015, 06:19 AM #14 (permalink)
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Default Re: B-12 Study

My wife had found this last week. I read it and noticed that breathing issues disqualified individuals from the trial which seems to be the case in most trials. I was very discouraged and stopped reading. US doctors are not I intrested in anything that the pharmaceutical industry won't make big money off of.
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Old 07-04-2015, 08:21 AM #15 (permalink)
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Default Re: B-12 Study

Disagree. There is an exercise trial ongoing. No money there. There is an inosine trial. Inosine is over the counter and I think fairly cheap. They trialed creatine in the past otc vs tamoxifen ( generic). They are trialing mexilitine ( generic)
There have been a couple of diet trials

Do the qualifications for trials need to change? Absolutely. That is less about money than the need for good biomarkers
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