The biotin trial results are out

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

Post by Sharon » Sat May 23, 2015 12:07 pm

Elliot - I would suggest you join the Biotin For Progressive MS Facebook -- people are updating their purchase information from all over the world
Here is the link to the Facebook post on Skip's Pharmacy. I think he is in the "ball park" with the pricing which is around $300/month if you take the 300 mg dose/day - obviously less if you decide to go with 100 mg or 200 mg. According to MedDay you need to take for about six months before deciding if it is of benefit. Someone has found it for $250 for a month supply at a New York compounding pharmacy


Hope this helps
Sharon

Edited
Sorry --- this is the link to the thread on Skip's Pharmacy

ElliotB
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Re: The biotin trial results are out

Post by ElliotB » Sat May 23, 2015 12:32 pm

Thanks for the info. I actually live about 15 minutes from Skip's, and will contact/visit them next week when they reopen.

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CureOrBust
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Re: The biotin trial results are out

Post by CureOrBust » Sat May 23, 2015 7:06 pm

questor wrote:When buying the biotin powder in bulk, why the need to put the biotin into capsules? After measuring out a dose, couldn't the biotin powder just be dissolved in water and swallowed, or sprinkled on food and eaten?
The problem with measuring out a single dose and placing it in liquid or on food, is the accuracy on such a small amount. It is far more accurate and easier to bulk it out with a "filler" and then measure out a much larger dose. Even easier to measure out 24 doses (the size of my capsule machine), add enough filler to completely fill the 24 capsules, thoroughly mix it, and then fill all the capsules evenly (ie totally full). If you measured out a 100mg dose, the accuracy of the machine would give you an error by default (its not 100% accurate), then when you push the dose into your drink some would be lost in the process. AND it would take a lot of time, each time. Its much quicker, easier and more accurate to make a batch of capsules and use filler. Its simply the practicality of it and also the reason the professionals do such.
Sharon wrote:Cure -- have you noticed any changes since starting the Biotin?
None I can attribute to Biotin alone. But it is also still "early days"

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CureOrBust
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Re: The biotin trial results are out

Post by CureOrBust » Sat May 23, 2015 7:52 pm

interesting..
COST
The company report that biotin is expected to cost approximately €2,100 per 28 days
treatment [Company confidential information].
http://www.hsc.nihr.ac.uk/files/downloa ... _Mar15.pdf

NB to admins: maybe we should add "Cerenday" to the title of the forum.

EricDrake
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Re: The biotin trial results are out

Post by EricDrake » Sun May 24, 2015 5:01 am

Wow at that price. How they want to sell it for that amount of money if there are other sellers on the market who sells it for much less? Or only they have the right at the beginning to sell it directly for MS, so the doctor only can prescribe their product?

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Re: The biotin trial results are out

Post by Jimpsull » Sun May 24, 2015 12:17 pm

220 mg calcium x 20 - 40 doses per day = 4400 - 8800 mg per day which IS a big deal.

http://www.mayoclinic.org/diseases-cond ... q-20058352

I have used the eu natural (40 x 5mg per day). It is more expensive but may be worth it to avoid the fillers.

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CureOrBust
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Re: The biotin trial results are out

Post by CureOrBust » Sun May 24, 2015 6:49 pm

Jimpsull wrote:220 mg calcium x 20 - 40 doses per day = 4400 - 8800 mg per day which IS a big deal.
I thought in the maths below you had already scaled up the individual capsule contents.
Jimpsull wrote:- doesn't contain calcium (20 - 40 x 66 - 220 mg is too much)

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CureOrBust
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Re: The biotin trial results are out

Post by CureOrBust » Sun May 24, 2015 7:07 pm

Jimpsull wrote:I have used the eu natural (40 x 5mg per day). It is more expensive but may be worth it to avoid the fillers.
I had a look on this product, and found a 5mg capsule. The back said no filler no nothing except for the Biotin. However, the picture of the capsule looked quite full and there were reviews how some people found the capsule a bit large to swallow. So how do they manage to fill such a large capsule with only 5mg of Biotin without any fillers, yet the capsules I purchased previously are MUCH smaller and DO have additional fillers, and were 10mg? Also, 100mg of the Bulk Biotin I purchased would be a tiny amount. My capsules (00 size) are full of the inert filler I added (about 6:1 of filler to biotin) :?

Picture of back: http://www.tipsfornaturalbeauty.com/wp- ... Biotin.jpg

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NHE
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Re: The biotin trial results are out

Post by NHE » Sun May 24, 2015 9:40 pm

Mayo Clinic wrote:It's thought that the calcium in supplements could make its way into fatty plaques in your arteries — a condition called atherosclerosis — causing those plaques to harden and increase your risk of heart disease.
That's why if you're taking calcium for your bones, then it's recommended to also take vitamin K2.

http://www.europeanreview.org/wp/wp-con ... 3-2440.pdf

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CureOrBust
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Re: The biotin trial results are out

Post by CureOrBust » Mon May 25, 2015 6:52 pm

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!

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Re: The biotin trial results are out

Post by 1eye » Tue May 26, 2015 8:37 am

Sure am glad I got my first two-year shelf-life's worth (250g) already. There was a definite pent-up need for this stuff. The price doesn't have to be this high, but phony shortages may drive it up. Making it is a well-know industrial volume process, so there's no excuse for that. Drug companies will try to scare people into giving them money, but this stuff should be close to free. There is a bulk process to manufacture it (cheap) and then technical, high-grade pharmaceutical process to control dosing with capsules. Also cheap and easy. No excuses, no artificial shortages should ever happen.

I know everybody watched 20 20 last night investigating knock-offs, drugs and cosmetics with bad contamination/adulteration contents that can actually kill you, from Singapore, India, Switzerland, etc. This is a matter for the police. Reputable Chinese dealers will not try to make big bucks off poor unsuspecting pwMS. If you need to use them, try doing it by phone or in writing. Many of the least trustworthy will be weeded out immediately, as they can not speak intelligible English or even read it, let alone write.
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1eye
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Re: The biotin trial results are out

Post by 1eye » Tue May 26, 2015 8:50 am

Sharon wrote:Elliot - I would suggest you join the Biotin For Progressive MS Facebook -- people are updating their purchase information from all over the world
Here is the link to the Facebook post on Skip's Pharmacy. I think he is in the "ball park" with the pricing which is around $300/month if you take the 300 mg dose/day - obviously less if you decide to go with 100 mg or 200 mg. According to MedDay you need to take for about six months before deciding if it is of benefit. Someone has found it for $250 for a month supply at a New York compounding pharmacy


Hope this helps
Sharon

Edited
Sorry --- this is the link to the thread on Skip's Pharmacy
I am Face-illiterate. I don't hold with no Face-bookery. Maybe someone could pass some of this along?
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ElliotB
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Re: The biotin trial results are out

Post by ElliotB » Tue May 26, 2015 9:34 am

I don't know anything about Facebook either.

I did contact Skip's earlier today and they sell 90 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).
Last edited by ElliotB on Tue May 26, 2015 10:59 am, edited 1 time in total.

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Re: The biotin trial results are out

Post by 1eye » Tue May 26, 2015 11:25 am

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.
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ElliotB
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Re: The biotin trial results are out

Post by ElliotB » Tue May 26, 2015 11:30 am

1eye, I had incorrectly posted the quantity originally, the correct cost is 90 capsules of 100mg for $300. Sorry for the error.

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