Biotin, good news (in french)

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frodo
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Biotin, good news (in french)

Post by frodo » Thu Oct 25, 2018 5:19 am

Source: https://archivesic.ccsd.cnrs.fr/MEM-UNI ... 01891571v1

Excerpt:

Ces résultats sont encourageants car la biotine est la seule molécule à l’heure actuelle de l’arsenal thérapeutique qui permette d’obtenir à la fois une amélioration significative de certains patients atteints de SEP progressives et une diminution du taux de progression de la maladie.

These results are encouraging because biotin is currently the only molecule out of the therapeutic arsenal that allows obtain at the same time a significant amelioration for some patients affected by progressive MS and a reduction of the progresion rate of the disease.

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jimmylegs
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Re: Biotin, good news (in french)

Post by jimmylegs » Thu Oct 25, 2018 7:54 am

take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

jerrygallow
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Re: Biotin, good news (in french)

Post by jerrygallow » Thu Oct 25, 2018 2:20 pm

I was taking about 10,000 per day and had to stop because my hair was falling out by the handfuls. The only information I can find on the Internet says that it makes your hair grow. Has anybody else experienced this with high doses

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Re: Biotin, good news (in french)

Post by ElliotB » Thu Oct 25, 2018 3:22 pm

10,000 mg per day or 10,000 mcg per day?

jerrygallow
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Re: Biotin, good news (in french)

Post by jerrygallow » Fri Oct 26, 2018 5:00 am

Mcg. Or 10g. These studies were using 50 to 200g. That requires a prescription.

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Re: Biotin, good news (in french)

Post by ElliotB » Fri Oct 26, 2018 5:29 am

There is a huge difference between 10mcg and 10mg and 10g. So you were taking 10g, are you positive? This is a much higher dose than recommended and used in the study (the maximum dose in the study was 300mg per day (100mg 3 x per day). Did the issues stop when you stopped taking the biotin?
Last edited by ElliotB on Fri Oct 26, 2018 6:44 am, edited 2 times in total.

Jaded
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Re: Biotin, good news (in french)

Post by Jaded » Fri Oct 26, 2018 6:22 am

I bought Pure Nature Biotin 10,000 mcg from Amazon. 10,000 mcg =10 mg =0.01grams. so 100 of those would get to 1 gram.
1 microgram is a millionth of a gram. I am not sure the dose used in the study - I thought it was around 30mg from something I read a while ago.

I took it for about 3 months and didn't really see any changes except my hair did grow quicker (but no change to thickness/thinness sadly). I actually bought it for my hair and thought if it helped MS symptoms that would be great.

I found this report - more studies continue. https://www.mstrust.org.uk/news/news-ab ... -licensing

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Re: Biotin, good news (in french)

Post by jimmylegs » Fri Oct 26, 2018 6:24 am

in context

https://www.mayoclinic.org/drugs-supple ... g-20062359
Normal daily recommended intakes for biotin are generally defined as follows:

Infants and children—
Birth to 3 years of age: 10 to 20 micrograms (mcg).
4 to 6 years of age: 25 mcg.
7 to 10 years of age: 30 mcg.
Adolescents and adults—
30 to 100 mcg.



MD1003 (high-dose biotin) for the treatment of progressive multiple sclerosis: A randomised, double-blind, placebo-controlled study (2016)
http://journals.sagepub.com/doi/abs/10. ... 8516667568

"Patients (n = 154) with a baseline Expanded Disability Status Scale (EDSS) score of 4.5–7 and evidence of disease worsening within the previous 2 years were randomised to 12-month MD1003 (100 mg biotin) or placebo thrice daily, followed by 12-month MD1003 for all patients.
...
MD1003 achieves sustained reversal of MS-related disability in a subset of patients with progressive MS and is well tolerated."


Targeting demyelination and virtual hypoxia with high-dose biotin as a treatment for progressive multiple sclerosis (2016)
https://www.sciencedirect.com/science/a ... 0815300733
"Initial clinical data have shown that daily doses of biotin of up to 300 mg can improve objective measures of MS-related disability."


High doses of biotin in chronic progressive multiple sclerosis: A pilot study (2015)
https://www.sciencedirect.com/science/a ... 4815000061

"23 consecutive patients with primary and secondary progressive MS originated from three different French MS reference centers were treated with high doses of biotin (100–300 mg/day) from 2 to 36 months (mean=9.2 months).
...
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."

10,000 mcg = 10 mg

100 mg = 1000x recommendations

300 mg = 3000x recommendations

locally available supplement options include
1000 mcg (1 mg) tablets. you'd need to take a jar of 100 at each mealtime to approximate these high dose studies.
(compare 17 mcg in a serving of cauliflower).
online option, 10 000 mcg (10mg) tabs. 10 with each meal to match research inputs.

10 g = 100,000x recommendations

Misdiagnosis of Graves' Disease with Apparent Severe Hyperthyroidism in a Patient Taking Biotin Megadoses (2016)
https://www.liebertpub.com/doi/abs/10.1 ... .2015.0664

"A patient with progressive multiple sclerosis was found to have extremely elevated free thyroxine, triiodothyronine, and suppressed thyrotropin (TSH) levels. His TSH receptor binding inhibiting antibody level was also elevated. This constellation of laboratory findings suggested a diagnosis of severe Graves' disease. All of the assays yielding abnormal results employed the biotin–streptavidin affinity in their design. The patient had no symptoms of hyperthyroidism, and detailed review of his medications revealed intake of megadoses of biotin. Temporary discontinuation of biotin treatment resulted in complete resolution of the biochemical abnormalities."

Biotin Treatment Mimicking Graves’ Disease (2016)
https://bit.ly/2PZ6IoW
"After discontinuation of biotin treatment, interference with laboratory tests has been reported to disappear within 8 hours. In our patients, thyrotropin and thyroid hormone levels were normalized 24 to 48 hours after the discontinuation of biotin, whereas levels of anti–thyrotropin receptor antibodies took up to 7 days to normalize."

i have not dug in to examine the quantity of biotin taken by these patients, however:

Hair Loss and Thyroid Disorders
http://www.btf-thyroid.org/information/ ... -disorders

"Severe and prolonged hypothyroidism and hyperthyroidism can cause loss of hair. ... Regrowth is usual with successful treatment of the thyroid disorder, though it will take several months and may be incomplete."
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Jaded
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Re: Biotin, good news (in french)

Post by Jaded » Fri Oct 26, 2018 6:41 am

We must be looking at similar studies JL. Reading the editorial of this report the para below was interesting: https://www.mstrust.org.uk/research/res ... r-prog-MSm


"One question raised by an accompanying editorial (link is external) is whether the improvements seen are the result of permanent improvement in MS due to remyelinaton or are temporary improvements in MS symptoms. The fact that improvements in disability tended to be apparent after 3 months would suggest an effect on symptoms rather than on the underlying MS. The researchers note that improvement in disability occurred more frequently in the high-dose biotin group for people who were not taking fampridine (Fampyra, a drug which can improve walking speed). They also note that improvement in disability was seen most often in people with a lower starting EDSS of 4.5 - 5.5 rather than 6 - 7."

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Re: Biotin, good news (in french)

Post by jimmylegs » Fri Oct 26, 2018 6:51 am

i would need clarification on this sentence "The fact that improvements in disability tended to be apparent after 3 months would suggest an effect on symptoms rather than on the underlying MS" - but have spent enough time on this for today.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

ElliotB
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Re: Biotin, good news (in french)

Post by ElliotB » Fri Oct 26, 2018 6:54 am

"The fact that improvements in disability tended to be apparent after 3 months would suggest an effect on symptoms rather than on the underlying MS"

Isn't any improvement a good thing!

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jimmylegs
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Re: Biotin, good news (in french)

Post by jimmylegs » Fri Oct 26, 2018 7:24 am

i'm allowed to wonder how the researchers made that conclusion
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

ElliotB
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Re: Biotin, good news (in french)

Post by ElliotB » Fri Oct 26, 2018 11:03 am

My point is simply that people within and outside the study (including some here on TIMS) are reporting some success with high dose biotin and regardless of the specific reason they are doing better, the bottom line is that they are doing better!

This is a new protocol and more time and studies will be needed to be done to determine the true effects of the treatment, over both the short and long term. While this does not appear to be the 'miracle' cure everyone was hoping for, the fact there have been positive results is without a doubt excellent news!!!

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Re: Biotin, good news (in french)

Post by jerrygallow » Fri Oct 26, 2018 12:05 pm

Sorry. I am using my phone with speech to text. Apple has this annoying autocorrect that cannot be disabled. It ruined this function that used to work much better. I am also legally blind. So despite any impression you may have of me swallowing gallons of biotin dont worry. I have done the research. Despite any impression to the contrary here, I am an ivy grad and can read. I just dont have time or patience to fastidiously edit these posts. The main concern is the same. 5 to 10 mg per day caused significant hair loss.

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Re: Biotin, good news (in french)

Post by jimmylegs » Fri Oct 26, 2018 1:27 pm

would be interesting to discover whether you have a thyroid x biotin interaction going on
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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