New study results for Methylcobalamin

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Mtzu

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Does anyone know if doctors will prescribe this? Has anyone here tried this? I found some old threads, but they are several years old.

CONCLUSION: The present study demonstrated for the first time that ultra-high dose methylcobalamin can significantly prolong survival and retard progression in ALS if administered early.

Link to the abstract in the journal Neurology:
Ultra-high dose methylcobalamin (E0302) prolongs survival of ALS: Report of 7 years? randomised double-blind, phase 3 clinical trial (ClinicalTrials.gov NCT00444613) (P7.060)
 

Nikki J

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My sister had daily IM injections for months after diagnosis. At the time she was also taking a number of supplements took off label tamoxifen and expanded access dex. I do not believe anything made a difference. If anything she progressed a little slower off everything. My neurologist is very proactive and has her ear to the ground. This has not been one of her recommendations to me.
 

Mtzu

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Nikki,

Thanks for the info. Do you happen to know what dosage your sister was taking?

It's great you have a neuro that's proactive. I need to find one like that.
 

Nikki J

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I don't remember exactly but since they were daily I am pretty sure it equalled or exceeded the high dose. Yes I am lucky with my neuro. Would not trade her for anyone even though I have met some other great doctors in my research travels
 
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uheintz

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Since I read this article I take 5 mg daily as sublingual tablet - very affordable !
 

MaxEidswick

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>if administered early

meaning?
 

Nikki J

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They excluded PALS with symptoms for over 3 years and or respiratory function under 60. They made the statement that those who received their diagnosis within 12 mos of symptoms had benefit. How they got that from the data was unclear from the abstract as was at what point those people received treatment. Was that also within the 12 months?
 
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nebrhahe53

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Nikki:

What does your Dr think is the most promising alternative out there now?
 

Nikki J

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I think she would say different things to you and me. She says ALS is not a single disease but a group of diseases and especially with me being known c9 FALS that is going to influence what she tells me. she has stated publicly I believe that she thinks the following show promise: gilenya, retigabine and actemra. All are available for off label prescription if your doctor and insurance company ( or wallet) agree.
Last I knew she was in favor of retigabine especially for FALS. She has my sister on it. I have the ( possibly erroneous) impression that she was not prescribing it for SALS but thought it was worth including SALS in the clinical trials I think originally they thought of only trying it for FALS as that was where they saw IPS benefit. I might be misremembering. It was a conversation during a very busy clinic visit.
She may well have new ideas when next I see her. She is always talking to other researchers
 
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