Biotin for progressive MS

Sedel F, Papeix C, Bellanger A, Touitou V, Lebrun-Frenay C, Galanaud D, Gout O, Lyon-Caen O, Tourbah A. High doses of biotin in chronic progressive multiple sclerosis: A pilot study.
Mult Scler Relat Disord. 2015 Mar;4(2):159-69

BACKGROUND: No drug has been found to have any impact on progressive multiple sclerosis (MS). Biotin is a vitamin acting as a coenzyme for carboxylases involved in key steps of energy metabolism and fatty acids synthesis. Among others, biotin activates acetylCoA carboxylase, a potentially rate-limiting enzyme in myelin synthesis.
OBJECTIVES:The aim of this pilot study is to assess the clinical efficacy and safety of high doses of biotin in patients suffering from progressive MS.
STUDY DESIGN:Uncontrolled, non-blinded proof of concept study
METHODS:23 consecutive patients with primary and secondary progressive MS originated from three different French MS reference centres were treated with high doses of biotin (100-300mg/day) from 2 to 36 months (mean=9.2 months). Judgement criteria varied according to clinical presentations and included quantitative and qualitative measures.
RESULTS:In four patients with prominent visual impairment related to optic nerve injury, visual acuity improved significantly. Visual evoked potentials in two patients exhibited progressive reappearance of P100 waves, with normalization of latencies in one case. Proton magnetic resonance spectroscopy (H-MRS) in one case showed a progressive normalization of the Choline/Creatine ratio. One patient with left homonymous hemianopia kept on improving from 2 to 16 months following treatment׳s onset. Sixteen patients out of 18 (89%) with prominent spinal cord involvement were considered as improved as confirmed by blinded review of videotaped clinical examination in 9 cases. In all cases improvement was delayed from 2 to 8 months following treatment׳s onset.
CONCLUSIONS:These preliminary data suggest that high doses of biotin might have an impact on disability and progression in progressive MS. Two double-blind placebo-controlled trials are on going.

Biotin, also known as vitamin H or coenzyme R, is a water-soluble B-vitamin (vitamin B7). Biotin is a coenzyme forcarboxylase enzymes, involved in the synthesis of fatty acids, isoleucine, and valine, and in gluconeogenesis.The only human health condition for which there is strong evidence of biotin’s potential benefit as a treatment isbiotin deficiency.

I am not going to comment on the content of this paper you can make of it what you will, it tells us very little for so many different reasons. However the final sentence is what is important. In fact I understand one (in 150 people) of the two trials have already finished and the results will be reported at the AAN on the April 24th. So if it works then the truth will be out in 1 month. The second trial finishes end of 2015.

So there you have it super Biotin MD1003 which is a highly-concentrated pharmaceutical-grade biotin (vitamin H). The dosage is 300 mg/day corresponding to 10,000 times the recommended daily intake of biotin. As such, MD1003 is no longer a food supplement: because of potential toxicity and new therapeutic properties at this dosage, it is an active pharmaceutical ingredient.

What will happen if the trial is a success will you wait for the drug to be developed as for the nutriceutical 100 10mg Biotin tablets are about £7 or less for health food stores online so about £2.50 a day. What will happen?

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  • Money, money, money… As usual… The first question, the first concern, the most interesting thing… The thing, beyond all other things, that makes minds SHRINK.

    MedDay is looking into something that might actually WORK for progressive MS. And if they haven't thought out what profit they might make on it – GOOD ON THEM. But certainly, if they are successful, they will become world renowned and loved for being the FIRST HUMANS to come up with something for primary and secondary progressive MS. And I'm sure that that will do their careers and finances no harm at all. Quite the opposite in fact. And their karma will be pure, untouchable.

    Money stinks.

  • What's your thinking on this? It looks promising surely? Especially as theyve got a patent meaning the opportunity to make money

  • I agree
    As much as people dislike drug companies getting rich, if they can better quality of like for people and families then I personally think they deserve all the riches that go with it
    Especially as stated if they have come up with something for the progressive variants of ms

  • Could this not be due to intestinal malabsorption as in leaky gut? There's been previous work done on this

  • As someone who has multiple spinal lesions which significantly affect my functioning, the most exciting aspect for me is that "Sixteen patients out of 18 (89%) with prominent spinal cord involvement were considered as improved as confirmed by blinded review of videotaped clinical examination in 9 cases". Only time will tell, but I look forward to the results from the larger trial being released in April – let's hope they bring some good news for non-relapsing MSers.

  • It does read well so far, the improvements were all based on exam but it would be good to hear from the patients perspective too
    As said before they must be semi confident based on the patent

  • This data suggest that high doses of biotin might have an impact on disability and progression in progressive MS. What will be the therapeutic effect results on RRMS people?

  • The same benefit? Surely it would possibly slow progression to secondary progressive and slow whatever neurodegeneratibe effects come as in PPMS?

  • There was a study done on this in 1999 too where they found significantly lower levels of biotin in msers and epileptics I believe?

    • In 1999 most people still thought that the problem of MS was due to autoimmunity….Bruce Trapp and Margaret Asira had just reminded people that MS was associated with nerve loss in 1997/1998. Cambridge was publishing the failure of campath in progression . We were realising that stopping autoimmunity was not going to stop progression in EAE, but were too focused on symptom control at the time.

      I would not have gone done the neutriceutical route and still largely steer clear of it.

    • So now you don't think it's down to autoimmunity MD? What's the new mantra then? Viral or 'just' inexplicable neurodegeneration with immune involved?

  • Are you guys still hanging your hat on the charcot theory then? Surely if you are all so heavily invested in it you must have a huge degree of confidence in it?

  • And would you recommend all msers take this if it turns out to work? As we stayed earlier it may help slow progression ?

  • I think it's a touch of both but viral would be the most common sense one based on the glandular fever link, the fact many claim it came on after stress or trauma, the fact viruses trigger relapses, the Faroe Island study regarding British people colonising the island etc

  • Any thoughts? I know of a couple of people who take biotin for Ms but not at the levels suggested here? It may explain the diet theory though as if you look what foods are rich in biotin they tend to be the ones suggested on Ms diets

    • Equally, some of dietary sources of biotin are big 'No, Nos" in some MS diets. Regardless of which diet you may or may not decide to subscribe to, the amount of biotin consumed in any of them would not be sufficient to have any sort of therapeutic effects on MS.

  • The biggest "regular" source of Biotin is synthesis by normal gut flora. One of the commercial patents for biotin synthesis starts with fumarate. Gut flora in MS is often abnormal; fumarates are beneficial in MS. Maybe all that is not a coincidence – but it's all speculative at this time.

  • Well, the first of the two randomized studies has been presented at the AAN-Meeting, showing a clinical improvement in 12% of the study patients in the biotin group compared to 0% patients in the placebo group. These data are better than any data even immunotherapeutics for the relapsing-remitting course have ever reached before, because they only could show an absolute risk reduction of clinical progression in up to 12% within two years, but no clinical improvement.

    Therefore I assume, that many patients will take biotin in the doses they can afford, which may be less than 300 mg per day.

    I was not able to identify studies (pubmed, that compared smaller doses of biotin with these high doses. And I am afraid, that these studies never will be performed. The normal daily uptake of biotin ist ot defined well, but is assumed to be around 100 µg. Even a 100 mg dose is 1000-fold the normal daily dose. Overdosage should not occur, because unnecessary biotin will be excreted soon.

    There are several possibilities, which doses would be enouph. Maybe dose could be reduced after a high-dose-boost at the beginning. One could argument, if the high dose ist safe, it doesn't matter. But I think it does matter, because there ist no need and no right for physicians to act in a way prioritizing phamaceutic sales. It is there duty to make therapy for patients as easy as possible!

  • Docs I read that biotin is used for basal ganglia disease which casues lesions. Although it's a rare neurological condition. And that some medications can cause a biotin deficiency.

    • And that if the patient is unresponsive to biotin then both thiamine (vitamin B1) and biotin are given, this is reported as being an effective treatment.
      I wonder if thiamine and biotin would be effective treatment for MS?

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