The biotin trial results are out

Biotin is an emerging therapy for the treatment of secondary progressive MS.
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CureOrBust
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Re: The biotin trial results are out

Post by CureOrBust » Tue May 26, 2015 6:36 pm

1eye wrote:
ElliotB wrote: I did contact Skip's earlier today and they sell 300 capsules of 100mg for $300. You do need a prescription and I am going to get one and see if it is covered by my insurance. It should be but if it is not, I will just continue to take the OTC Biotin I have been taking for the past few weeks, 80mg per day (40 in the AM, 40 in the PM).
I think the trial they did showed efficacy at 300 mg per day. That would be 3 x 100mg capsules per day at $1 per capsule. Not highway robbery, I guess, and he's supposed to have "the same biotin" used in the trial. I don't know what the results of the chemical analysis that someone said he was doing were, but I think the stuff's extraction is probably OK.

That's $3 a day or about $1k /year. I hope some vendor breaks the "gas war", and steals all the business. They won't even prescribe me conventional DMDs, but I will build a "buyers' club" if I have to.
I have my new batch of biotin being shipped from purebulk, no prescription. They do ask for some explanation/proof that you understand/ability with the dosing. They only had 10g or 100g bags available, so I went with the 100g, By my calculations, that should give me just under a years worth. Or in reality, enough until the dust settles and the confusion clears up.

I just went and checked today, and they are now also out of 100g bags of it, only 10g bags are left. 8O

By my calculations, it is costing me about $AUD0.72 for 3x100mg capsule (ie per day), ignoring the filler cost and the time to create the capsules, and the equipment (ie capsule filler) I already had. ie just the cost of the Biotin and the capsules.

And on a side note, I am not on Facebook; "conscientious objector".

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Re: The biotin trial results are out

Post by BBE » Wed May 27, 2015 1:21 am

We have just ordered 6 x 10g bags from purebulk. As CureOrBust said, there were no other bags available anymore. And the same approach, for next 6 month we will give it a try and until that time it could be more clear how it works, and also purebulk could restock.
I hope it will not cause any serious health complications in that dose.

BTW. has anybody noticed that according to wikipedia, Biotin is produced from fumaric acid. And also dimethyl fumarate (Tecidifera) is also from fumaric acid. Does it mean anything special?

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Re: The biotin trial results are out

Post by NHE » Wed May 27, 2015 1:38 am

BBE wrote:BTW. has anybody noticed that according to wikipedia, Biotin is produced from fumaric acid. And also dimethyl fumarate (Tecidifera) is also from fumaric acid. Does it mean anything special?
Probably not. The two molecules have very different structures.

Biotin

Image

Fumaric Acid

Image

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Re: The biotin trial results are out

Post by NHE » Sat May 30, 2015 4:31 am

CureOrBust wrote:
ElliotB wrote:I had posted this link in one of the other Biotin threads. This company seems to be a good source for bulk pharmaceutical grade Biotin:
http://purebulk.com/biotin-pure/
I got my last batch from the above, so I did a quick search for other options, and came across the following source. Interesting that all the reviews are by people referencing the MS trial. I then also noticed the above source currently only has 10g or 100g options.

https://www.bulksupplements.com/pure-bi ... in-b7.html

edit...
And they are out of stock.
Maybe that's why the other place only has bags in the two sizes available. People with MS are draining their supply!
To anybody who has purchased bulk biotin, did your shipment arrive with a certificate of analysis or any other quantifiable evidence of purity?

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CureOrBust
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Re: The biotin trial results are out

Post by CureOrBust » Sat May 30, 2015 5:35 am

NHE wrote:To anybody who has purchased bulk biotin, did your shipment arrive with a certificate of analysis or any other quantifiable evidence of purity?
Actually, no. I have purchased bulk powders online before, and most times they have not included such, but sometimes they have.

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Re: The biotin trial results are out

Post by burg » Sun May 31, 2015 4:16 am

Purebulk is out of 100g of Biotin. but Bulksupplements has it. I ordered it with a scale.
The will probably see out too. They all sold out in England, so everyone is buying it here.
http://www.bulksupplements.com/

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Re: The biotin trial results are out

Post by CureOrBust » Sun May 31, 2015 2:47 pm

burg wrote:Purebulk is out of 100g of Biotin. but Bulksupplements has it. I ordered it with a scale.
The will probably see out too. They all sold out in England, so everyone is buying it here.
http://www.bulksupplements.com/
They obviously just got some new stock, as last week, apart from the >=1kg batch, they were out of stock. But I just looked/tested and could access a couple of their different smaller batch sizes. Maybe they saw the demand and decided to break up their larger bags into the smaller units. I notice they are now out of 1kg and 5kg bags.

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Re: The biotin trial results are out

Post by NHE » Sat Jun 06, 2015 12:19 am

Sharon wrote:Cerebrospinal fluid levels of biotin in various neurological disorders

A study abstract from 1999 showing low levels of Biotin in the csf of people with MS.

http://www.ncbi.nlm.nih.gov/pubmed/10577274
Anagnostouli et al. 1999 wrote:Reduction of biotin levels in patients with multiple sclerosis could be attributed to intestinal malabsorption caused by the underlying disease
If this is correct, then it seems like a sublingual form of biotin might be appropriate.

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Re: The biotin trial results are out

Post by CureOrBust » Sat Jun 06, 2015 1:11 am

NHE wrote:If this is correct, then it seems like a sublingual form of biotin might be appropriate.
or it may be cheaper/easier to just dose us with many times the biological need in the hope some gets through.
Personally, with the high dose we are talking here, they have gone well beyond an amount that would only correct a nutritional imbalance. Sure, some may help correct the lower levels, but there is more to it than that.

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Re: The biotin trial results are out

Post by 1eye » Wed Jun 10, 2015 7:57 pm

If suppliers are running out of this stuff and restocking, it may be that some potential users don't know that:

AT 300mg PER DAY 250 grams will take you past its shelf life. Don't buy it all up: the shelf life means it will be expired before you run out.

The shelf life is 2 years.
This unit of entertainment not brought to you by FREMULON.
Not a doctor.

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Re: The biotin trial results are out

Post by CureOrBust » Thu Jun 11, 2015 1:55 am

1eye wrote:That's $3 a day or about $1k /year. I hope some vendor breaks the "gas war", and steals all the business. They won't even prescribe me conventional DMDs, but I will build a "buyers' club" if I have to.
1eye wrote:If suppliers are running out of this stuff and restocking, it may be that some potential users don't know that:

AT 300mg PER DAY 250 grams will take you past its shelf life. Don't buy it all up: the shelf life means it will be expired before you run out.

The shelf life is 2 years.
Unless you wish to start a buyers club.

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Re: The biotin trial results are out

Post by Thekla » Tue Jun 16, 2015 3:01 am

I have been taking approx 100mg otc since early April. I was leery of the fillers, so I opted for a lower dose. I have received 30g pure powder (I ordered from bulksupplements) and a scale, so jumping up to 300mg. I can say that my balance is better and so is my bladder. I cannot say the biotin is the cause because I have also been working or revamping my microbiome according to Dr Perlmutter. But regardless, I am doing better, feeling stronger and steadier on my feet.

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ton
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Re: The biotin trial results are out

Post by ton » Wed Jun 17, 2015 1:40 pm

17 Jun 2015

Today in Press Releases of biotin producers:

MedDay and DSM announce a partnership to produce pharmaceutical grade D-Biotin to treat progressive multiple sclerosis.

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Re: The biotin trial results are out

Post by NHE » Wed Jun 17, 2015 3:40 pm

ton wrote:17 Jun 2015

Today in Press Releases of biotin producers:

MedDay and DSM announce a partnership to produce pharmaceutical grade D-Biotin to treat progressive multiple sclerosis.
Link: http://www.dsm.com/corporate/media/info ... rosis.html

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Re: The biotin trial results are out

Post by EricDrake » Fri Jun 19, 2015 5:35 am

More result:

http://www.news-medical.net/news/201506 ... ve-MS.aspx


Could somebody explain this: Mean CGI and SGI scores assessed at month 12 were statistically significantly better in the intervention group compared with the placebo group (p<0.0001 and p=0.0094, respectively).

what are these p numbers and what do they mean based on the article with these numbers?

he Clinical Global Impression of change is a 7 point scale that requires the clinician to assess how much the patient's illness has improved or worsened relative to a baseline state at the beginning of the intervention and rated as: 1, very much improved; 2, much improved; 3, minimally improved; 4, no change; 5, minimally worse; 6, much worse; or 7, very much worse.

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