Progressive MS treatment phase III study update

Biotin is an emerging therapy for the treatment of secondary progressive MS.

Progressive MS treatment phase III study update

Postby MSUK » Tue Apr 07, 2015 5:22 am

MedDay, a biotechnology company focused on the treatment of nervous system disorders, has provided further information about the design of its pivotal clinical trial (MS-SPI) to investigate the efficacy and safety of MD1003 in the treatment of primary and secondary progressive multiple sclerosis..... Read More - http://www.ms-uk.org/MStypes
MS-UK - http://www.ms-uk.org/
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Re: Progressive MS treatment phase III study update

Postby Anonymoose » Tue Apr 07, 2015 5:33 am

Haven't noticed this before so looked it up. Md1003 is highly concentrated biotin approved by FDA as a food additive.
http://www.medday-pharma.com/research-d ... ne/md1003/

I wonder if one could get their hands on it without paying the pharma price...
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Re: Progressive MS treatment phase III study update

Postby PointsNorth » Tue Apr 07, 2015 2:40 pm

MD100x On SALE now! :)

http://www.swansonvitamins.com/swanson- ... mg-60-tabs

The Long Hair Community is declaring they have squatters rights to this water soluble vitamin.

http://archive.longhaircommunity.com/sh ... hp?t=16785
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Re: Progressive MS treatment phase III study update

Postby 1eye » Tue Apr 07, 2015 8:02 pm

I don't want to bust too many bubbles, but the supplement form is 1%. You can buy it as 100% but it ain't cheap. I don't have the figures but let's say a kg costs $1000. If you have the bucks you can have it compounded. At about 1/3 of a gram per dose (somewhere around the amount I saw, somewhere) that's 3000 doses, or 100 months. 8 years or so. I dunno if it does any fixing, or if the rest is up to you. The time-lapse version in the ad referred to above is most likely 1%, and you have to put 33g in your body of mostly time-lapse filler, to get a 1/3g dose.

That's a lot of bottles of filler. Not recommended. I, perhaps mistakenly blame vit C time-lapse gunk for one of my kidney stone attacks.

But if you wait for the trial to end, it'll end up costing more like $1,000,000 for 1 kg,

Funny old world,isn't it?

Also: don't buy much more than a quarter kilo of the 99% pure stuff, if what I saw somewhere is true, and it only lasts about 2 years on the shelf.
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Re: Progressive MS treatment phase III study update

Postby Squeakycat » Wed Apr 08, 2015 1:00 pm

Bursting bubbles here.

Sigma Aldrich, a major research and pharmaceutical chemical supplier, sells 5 grams of pharmaceutical grade biotin for $527.

5 grams is 5,000 milligrams.

At 300 mg/day, that is 16+ days worth of biotin at around $33/day. Cheap by the standards set by pharma for MS drugs.

But this is the only drug that has shown any real benefit in progressive MS so even at roughly $12,000 a year, that seems a reasonable price to pay.

In spite of the patent, I don't see any way for the manufacturer to prevent companies such as Sigma Aldrich from selling biotin since it has many uses beyond MS and SA doesn't ask what you use it for, just your account number. :>)

A patent will prevent someone like Biogen from selling it for MS, although they can always cross license it for their use patent on dimethyl fumarate, Tecfidera, another common compound that is widely available in various forms.
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Re: Progressive MS treatment phase III study update

Postby 1eye » Wed Apr 08, 2015 5:42 pm

I think my description is compatible with yours. If you look at Alibaba the Chinese sell 99%, medical grade, cosmetic grade, and animal food grade, as well as 1 and 2%. The good stuff is steeper. If you search "bulk biotin" you can get it in North America, for now. It's used by farmers here too, is my guess. Remember, shelf life of 2 years! It's certainly (for now) cheaper than interferon, or any recent FDA-blessed medicines.

To be more exact, 300 mg is 0.3 grams, times 365 days a year is 109.5 grams per year. 2 years' worth is 219 grams. If you could store it that long, at 300 mg a day, 1 kilogram would last you about 9 years and 4 months.
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Re: Progressive MS treatment phase III study update

Postby scotland » Thu Apr 09, 2015 6:03 am

Hi
Can you folks, whom are all much smarter than me, explain how the normal health food /vitamin store variety of biotin relates to the pharma variety. I understand the are differences in the
confirmed daily dose you get in a pill etc and purity issues etc, but it seems to be fairly easy to find 5000 and 10000 microgram supplements around for the stuff. It looks abit like the old dosing trick to levels to take it out of the reach of the average joe, aka us.
The results they release at the AAN meeting at the end of the month will be interesting, here is hoping this can offer some help.
I am always optimistic, but not super optimistic!
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Re: Progressive MS treatment phase III study update

Postby 1eye » Thu Apr 09, 2015 6:37 am

Always be careful of the units used. A milligram is a thousandth of a gram (1g/1000). A micro-gram is a millionth (1g / 1,000,000). An IU is an International Unit (not sure what that is, think it's pretty small). A mole is related to the mass of one molecule, which depends on the chemical makeup, or ratio of elements, in one molecule. Whether the stuff is liquid or not, concentration, etc. A lot of things may go into what makes a dose. A lot of pharmacists and doctors get it wrong, and more often than it should be, death is the result. Purity is affected by age, temperature of storage, humidity, exposure to gases, may be hard to control. There is a designation USP, which might help. But health food/vitamin variety are usually 1 or 2 %, not 98 or 99%, and the rest is filler, or some other stuff, which may also be active biologically.
I am always optimistic, but not super optimistic!


Where is Mr. Optimistic, SuperSoberMan when you need him? Probably got tangled up in his cape again...
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Re: Progressive MS treatment phase III study update

Postby Jimpsull » Mon Apr 13, 2015 11:44 pm

The pharma grade pure biotin I found was only about $166 per kg. that's 1000000 mg or about 333 days at 300 mg per day. But it would be hard to control dosing. Since the half life of biotin is about 2 hours and any excess gets pissed out, I want to divide my daily dosage evenly throughout the day.

I am thinking 10 mg per hour throughout the waking hours is about 180 mg per day. I got 600 10000mcg pills for $45 which will last me more than a month.

Reading the patent, results were seen at 100 mg a day in some case studies. Since they were divided in three doses I believe my hourly dosing plan will be more efficient- hopefully delivering 300mg results in 180 mg per day.

$45 per month is worth it to me to avoid dealing with measuring out 18 doses of 10 mg per day.

Since it took 2 - 12 months to see results I'm committing $90 - $540 for this trial. I dumped 5k on NUCCA on a leap of faith - this seems like a good calculated risk.

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Re: Progressive MS treatment phase III study update

Postby Jimpsull » Tue Apr 14, 2015 3:11 am

Another principle I am going to apply in my study size n=1 is to assume that foods containing biotin also contain elements that assist the body in the uptake of biotin.

As practical I will eat a few peanuts or a little Swiss chard with my hourly biotin 10 mg biotin dose. I'm Going to keep a log. I'm Still debating what metric to use to evaluate results. I am hoping to increase "time to deterioration " in my soccer games with my children, but it's a fairly subjective measure.

Let me know if anyone wants to duplicate my study. We can make the sample size greater than 1.
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Re: Progressive MS treatment phase III study update

Postby PointsNorth » Tue Apr 14, 2015 10:55 am

Jim, have you considered making you own capsules? I made my own cannabis CBD capsules.

http://capsuleconnection.com/

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Last edited by PointsNorth on Tue Apr 14, 2015 7:39 pm, edited 1 time in total.
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Re: Progressive MS treatment phase III study update

Postby Jimpsull » Tue Apr 14, 2015 6:30 pm

I might go that route if I had more time than money. If I could encapsulate at a rate of 120 capsules per hour and the capsules were free I'd still have to work 60 hours to save $360 - definitely not worth the aggravation.

$45 per month isn't cost prohibitive for me.
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Re: Progressive MS treatment phase III study update

Postby PointsNorth » Tue Apr 14, 2015 8:05 pm

Good Luck. I hope you have people joining you. Keep us up to date on your experience.

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Re: Progressive MS treatment phase III study update

Postby NHE » Tue Apr 14, 2015 10:35 pm

Jimpsull wrote:I might go that route if I had more time than money. If I could encapsulate at a rate of 120 capsules per hour and the capsules were free I'd still have to work 60 hours to save $360 - definitely not worth the aggravation.

$45 per month isn't cost prohibitive for me.


It looks like you could fill 100 capsules in about 3 or 4 minutes once you get a bit of practice.

http://capsuleconnection.com/profiller-1100
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Re: Progressive MS treatment phase III study update

Postby scotland » Wed Apr 15, 2015 9:21 am

This will become quickly interesting. It will be nice for those of us whom are progressive if this offers some relief. After reading the patent information, the results to be released later this month should be interesting. It will also be interesting to see what they price it at. The market would appear to be a bit of a monopoly right now for progressive treatment. This drug, or vitamin as it were could be a small cost fraction of other treatments. I do not want to be too negative, but does anyone else wonder it they set the strength or dosage of the treatment to take it out of the easily accessible supplement market. We could all find ways to take 10 to 50 mgs no problem
There goes the price of biotin!?
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