ALSUntangled No. 30: Methylcobalamin

,

doi:10.3109/21678421.2015.1070574

Cited by 7 publications

(5 citation statements)

References 24 publications

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“…161 Based on current clinical data, ALSUntangled have provided recommendations to encourage the replication of findings and the validation of the use of vitamin B12 in ALS. 162 …”

Section: Dietary Interventions That Address Pathological Mechanisms Imentioning

confidence: 99%

Exploring targets and therapies for amyotrophic lateral sclerosis: current insights into dietary interventions

Ngo¹,

Mi²,

Henderson³

et al. 2017

DNND

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A growing number of preclinical and human studies demonstrate a disease-modifying effect of nutritional state in amyotrophic lateral sclerosis (ALS). The management of optimal nutrition in ALS is complicated, as physiological, physical, and psychological effects of the disease need to be considered and addressed accordingly. In this regard, multidisciplinary care teams play an integral role in providing dietary guidance to ALS patients and their carers. However, with an increasing research focus on the use of dietary intervention strategies to manage disease symptoms and improve prognosis in ALS, many ALS patients are now seeking or are actively engaged in using complementary and alternative therapies that are dietary in nature. In this article, we review the aspects of appetite control, energy balance, and the physiological effects of ALS relative to their impact on overall nutrition. We then provide current insights into dietary interventions for ALS, considering the mechanisms of action of some of the common dietary interventions used in ALS, discussing their validity in the context of clinical trials.

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“…161 Based on current clinical data, ALSUntangled have provided recommendations to encourage the replication of findings and the validation of the use of vitamin B12 in ALS. 162 …”

Section: Dietary Interventions That Address Pathological Mechanisms Imentioning

confidence: 99%

Exploring targets and therapies for amyotrophic lateral sclerosis: current insights into dietary interventions

Ngo¹,

Mi²,

Henderson³

et al. 2017

DNND

View full text Add to dashboard Cite

show abstract

“…Analysis of the therapeutic effect of methylcobalamin on the symptoms of ALS would suggest that, although methylcobalamin at high doses may have some beneficial effect, the perceived rapid improvement in symptoms experienced by the patient described in this case presentation is from the actions of benfotiamine and not methylcobalamin [29].…”

Section: Benfotiamine and Alsmentioning

confidence: 84%

Impaired Thiamine Metabolism in Amyotrophic Lateral Sclerosis and Its Potential Treatment With Benfotiamine: A Case Report and a Review of the Literature

Mann¹

2023

Cureus

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Homogenates of brain tissue from the frontal cortex at autopsy in patients with amyotrophic lateral sclerosis (ALS) showed dramatically reduced levels of the enzyme thiamine pyrophosphatase (TPPase), the enzyme responsible for the conversion of thiamine pyrophosphate (TPP) to thiamine monophosphate (TMP). Additionally, free thiamine (vitamin B1) and TMP levels have been shown to be significantly reduced in the plasma and cerebral spinal fluid (CSF) of patients with ALS. These findings suggest that there is impaired thiamine metabolism in patients with ALS. Impaired thiamine metabolism decreases adenosine triphosphate (ATP) production and is a well-established cause of neurodegeneration. Decreased levels of TPPase, resulting in decreased levels of TMP in the cells of the frontal cortex, might account for the focal neurodegenerative changes observed in motor neurons in ALS. Benfotiamine, a safe, lipid-soluble, highly absorbable thiamine analogue, significantly raises free thiamine, TMP, and TPP levels in the blood. A case in which benfotiamine may have positively impacted the symptoms of a patient with ALS is presented. The use of benfotiamine in patients with ALS appears to be a promising therapeutic option. Considering the severity and the lack of satisfactory treatment options associated with this disease, more research on the effects of benfotiamine on the course of ALS is urgently needed.

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“…A recent phase II/III RCT indicated that ultra-high dose methylcobalamin (vitamin B12) had a positive effect on disease progression in a subset of ALS patients [ 45 ]. However, at present, there is not sufficient evidence to recommend any B vitamins specifically against ALS [ 27 , 44 , 45 ]. Moreover, in other neurodegenerative diseases, studies on the efficacy of vitamin B as a treatment option in patients without an underlying deficiency are also conflicting [ 46 – 48 ].…”

Section: Discussionmentioning

confidence: 99%

“…In addition, “ALS untangled” is an initiative that systematically reviews alternative and off-label treatments for ALS, enabling patients and clinicians to make more informed choices [ 23 , 24 ]. For example, vitamin B, metformin, and low-dose naltrexone have been discussed as possible future treatments against ALS [ 25 – 27 ], but the effects of these medications on ALS are not thoroughly studied in humans. To the best of our knowledge, studies on ALS patients' use of nutritional supplements and off-label medications are scarce [ 28 , 29 ].…”

Section: Introductionmentioning

confidence: 99%

Use of Off-Label Drugs and Nutrition Supplements among Patients with Amyotrophic Lateral Sclerosis in Norway

Johanson

Tysnes

Bjerknes

2022

Neurology Research International

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Background and Objectives. Amyotrophic lateral sclerosis (ALS) is a lethal neurodegenerative disease, characterized by gradual paralysis and muscle atrophy. Riluzole, the only approved treatment in Norway, increases mean survival by 3–6 months. The use of off-label medications and nutritional supplements is common in other serious conditions, such as Parkinson’s disease and dementia. The aims of this study were to investigate to what extent Norwegian ALS patients use supplements and off-label medications and whether this is related to their health-related quality-of-life (HRQOL). Materials and Methods. A cross-sectional questionnaire study was performed, where 41 ALS patients reported their use of off-label treatments, as well as self-perceived HRQOL using the RAND-12 questionnaire. Results. A majority of respondents used riluzole. Of the 41 respondents, 18 (43.9%) reported use of off-label medications and 18 (43.9%) used nutritional supplements. Low-dose naltrexone was the most commonly used off-label medication, whereas vitamins accounted for most of the nutritional supplements. The respondents’ RAND-12 component scores were significantly lower than those of the general population. Low-dose naltrexone and vitamin B were associated with a better physical component score. Conclusions. Most of the respondents in our study adhere to the recommended treatment protocols, as less than half of them reported using off-label medications or nutritional supplements against ALS. Positive correlations between physical HRQOL and use of low-dose naltrexone or vitamin B were demonstrated. These results warrant further investigations.

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ALSUntangled No. 30: Methylcobalamin

Abstract: Baker, Kristiana Salmon. Note: this paper represents a consensus of those weighing in. The opinions expressed in this paper are not necessarily shared by every investigator in this group.

Cited by 7 publications

References 24 publications

Exploring targets and therapies for amyotrophic lateral sclerosis: current insights into dietary interventions

Exploring targets and therapies for amyotrophic lateral sclerosis: current insights into dietary interventions

Impaired Thiamine Metabolism in Amyotrophic Lateral Sclerosis and Its Potential Treatment With Benfotiamine: A Case Report and a Review of the Literature

Use of Off-Label Drugs and Nutrition Supplements among Patients with Amyotrophic Lateral Sclerosis in Norway

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