High Biotin Levels may help Progressive MS

[SuzE-Q]

This is interesting, small and unblinded, but still...

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Mult Scler Relat Disord.

2015 Mar;4(2):159-69. doi: 10.1016/j.msard.2015.01.005. Epub 2015 Jan 24.

High doses of biotin in chronic progressive multiple sclerosis: A pilot study.

Sedel F1, Papeix C2, Bellanger A3, Touitou V4, Lebrun-Frenay C5, Galanaud D6, Gout O7, Lyon-Caen O2, Tourbah A8.

Abstract
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 centers 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.

[SalpalSally]

Gee, it may be worth a try??!! Biotin supplements are OTC.

If it works, look for the price to go up 1000 fold

Thanks Suz.

[SuzE-Q]

Gee, it may be worth a try??!! Biotin supplements are OTC.

If it works, look for the price to go up 1000 fold

Thanks Suz.

300 mg IS a high dose, I just checked an old bottle in my cupboard that I haven't touched in years, and each tablet is 300 micrograms.

Still, it's a water soluble B vitamin, that's (currently) cheap. Think I'll pick up a fresher bottle. So few treatment options for progressive forms, let alone, treatments that IMPROVE symptoms.

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[SuzE-Q]

Actually, I take that back. I just went to buy some more, and it now comes in 1000 mcg capsules, suggested daily dose is 1x/ day.

So, 300 mg (3,000 mcg) is not as excessively higher than current standard dose.

[SuzE-Q]

The source isn't ideal, but:

There has never been a report of biotin toxicity from foods in any human or animal model that we have been able to find. Similarly, the National Academy of Sciences was unable to find any evidence for biotin toxicity, even at doses going up to nearly ten thousand times the adequate intake level recommendation. You can be confident that the amount of biotin found even in the richest food sources is not causing you any harm when these foods are consumed in everyday serving sizes.

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[jendie]

I was thinking about taking biotin for other reasons, this is more incentive.

[SuzE-Q]

Actually, I take that back. I just went to buy some more, and it now comes in 1000 mcg capsules, suggested daily dose is 1x/ day.

So, 300 mg (3,000 mcg) is not as excessively higher than current standard dose.

Actually,1000 mcg = 1 mg. My math was wrong above. It IS a high dosage in the study, it's 300,000 mcg!

[SuzE-Q]

Biotin blinded study results released:

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The primary endpoint was met (p=0.0051, Fisher’s exact test) in the intent to treat population with 12.6% of patients in the MD1003 arm showing an improvement of EDSS (Expanded Disability Status Scale) or TW25 (a timed 25-foot walk) at Month 9, confirmed at Month 12, compared to none of the patients (0%) in the placebo arm.

The primary endpoint was supported by secondary analyses showing evidence for a decrease in the risk of disease progression. The mean change of EDSS between M0 and M12 decreased in the MD1003 group (-0.03) compared to progression in the placebo group (+0.13, p=0.015). In the MD1003 arm, only 4% of patients treated with MD1003 exhibited EDSS progression at M9 confirmed at M12 vs 13% in the placebo group (p=0.07), which equates to a 67% decreased risk of progression in the active arm within the studied period. The study was not prospectively powered to reach significance for this secondary endpoint.

MD1003 was well tolerated. The overall incidence of adverse events was similar across the two groups. One patient died from suicide in the active arm, however this event was not considered as related to the drug. In 5 patients, abnormal laboratory data indicated that MD1003 may affect the results of immunoassays which use biotinylated antibodies and substrates.

[jendie]

Reviving old post. I've been taking 10,000 mcg Biotin OTC, twice a day and when I recently did the timed 25ft walk at a dr appt there was a noticable improvement. I'm going to buy a new bottle today since I'm out at the moment. I didn't tell my doctor about my self medicating with high doses of OTC Biotin.

I'm doing the 25' walk in 16 seconds as opposed to 21. I'm walking farther faster, but the ground needs to be perfectly flat. I'm not so good on uneven terrain or a slope.

I'm going to continue taking taking high does of OTC Biotin to see what happens.

[Howie]

I hope you have continued improvement. It sounds like you are definitely getting better. And hush for now sounds like a good idea.

[agate]

Reviving old post. I've been taking 10,000 mcg Biotin OTC, twice a day and when I recently did the timed 25ft walk at a dr appt there was a noticable improvement. I'm going to buy a new bottle today since I'm out at the moment. I didn't tell my doctor about my self medicating with high doses of OTC Biotin.

I'm doing the 25' walk in 16 seconds as opposed to 21. I'm walking farther faster, but the ground needs to be perfectly flat. I'm not so good on uneven terrain or a slope.

I'm going to continue taking taking high does of OTC Biotin to see what happens.

Yes, uneven terrain and slopes drive me wild. I'm always astonished to find I just can't do them unless I'm very very careful.

[Sunshine]

Reviving old post. I've been taking 10,000 mcg Biotin OTC, twice a day and when I recently did the timed 25ft walk at a dr appt there was a noticable improvement. I'm going to buy a new bottle today since I'm out at the moment. I didn't tell my doctor about my self medicating with high doses of OTC Biotin.

I'm doing the 25' walk in 16 seconds as opposed to 21. I'm walking farther faster, but the ground needs to be perfectly flat. I'm not so good on uneven terrain or a slope.

I'm going to continue taking taking high does of OTC Biotin to see what happens.

My doc said to take 100mg pure Biotin three times per day, which is a much much higher dose than what you are taking. I use Purebulk pure Biotin powder that I measure out every day in a scale, ...it has no fillers in it.

[Sunshine]

Also, your doc needs to know. Biotin makes some lab results very inaccurate, causing you to look very sick when you are not!

[Lazarus]

I am posting part of aa Biotin thread from the website Active MSers:


#9 Report Post
Old 04-27-2015, 06:37 AM
Mouse Mouse is offline
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Default Hold yer horses..
Whilst this sounds like fabulous news (and I really hope it is) this data has not yet been published or peer-reviewed. We have to wait & see.

Personally, I think the use of the 67% figure is very misleading.

4% of the Biotin-treated patients and 13% of the placebo group progressed.

If we do the maths - originally there were 103 patients in the treatment group, and 51 taking placebo. 12 patients dropped out of treatment, and 8 dropped out of placebo - leaving 91 taking biotin and 43 taking sugar pills.

Of these groups, 4% of 91, i.e. 4 patients progressed on the biotin and 13% of 43, i.e. 7 patients progressed on the placebo.

These numbers sound far less convincing.

The difference between 4 and 7 from treatment groups of this size give a p-value of 0.07. This is not a statistically significant difference between the two treatment groups.

It is very common for companies for overstate their results before the data has been rigorously analysed and peer reviewed, and I would hate for anybody to get their hopes up based on this data released by the company themselves.
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#10 Report Post
Old 04-27-2015, 09:39 AM
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Mouse is spot on (are you the same Mouse as often featured at the site below?). You took the words right out of my mouth. "Over-hyped" is how this result is best described. Leading MS prof at MS Research breaks it down here:

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[Sunshine]

Yes, I agree. I think because my neuro urged it I was willing to give it a shot. I have little hope it will help. I suspect that it will make a difference on a small subset of patients.