Progressive MS treatment phase III study update

Biotin is an emerging therapy for the treatment of secondary progressive MS.
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CureOrBust
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Re: Progressive MS treatment phase III study update

Post by CureOrBust »

NHE wrote:There's at least one company that's selling biotin with a coconut oil filler supposedly to increase absorption. I've never heard of them before and know nothing about them though.

http://www.amazon.com/Enhanced-Coconut- ... B00T56FQAE/
iHerb sells 3 different brands containing 10000mcg biotin.
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Re: Progressive MS treatment phase III study update

Post by David1949 »

The article I read just says they're testing this stuff. Where does it say it actually works?
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Re: Progressive MS treatment phase III study update

Post by 1eye »

Friday, April 17, 2015
MedDay announces its pivotal Phase III study of MD1003 in patients with Progressive Multiple Sclerosis meets primary endpoint

news
~ Detailed Phase III data will be presented at AAN Annual Meeting in Clinical Trials Plenary Session on April 24th 2015 ~
and:

http://www.thisisms.com/forum/general-d ... 26197.html has a link to another MS-UK article, http://www.ms-uk.org/emergingtherapies.
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Re: Progressive MS treatment phase III study update

Post by scotland »

Its nice we do not have to wait long for an official result on this. I believe Friday?

I have wondered if companies tend to harbour their newer better ships (medications), and continue to use their battle tested, (profitable) ones until there is something newer and better which puts a shot across their bow.
It will be interesting to see if this adds any heat and competition to the progressive battle.
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Re: Progressive MS treatment phase III study update

Post by 1eye »

I think it will be impossible to corner this market at a high price. Just as with Ampyra 4-AP can be bought as itself, biotin is available from a lot of places. Making it a cash cow will be very difficult. The vendor could gain a lot of goodwill by not trying to target wallets,
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Re: Progressive MS treatment phase III study update

Post by Jimpsull »

http://www.medday-pharma.com/news-and-e ... sclerosis/

Good news although
12.6% showing improvement less than I had hoped for.
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Re: Progressive MS treatment phase III study update

Post by 1eye »

Don't forget these folks took a long time to get to the state they were in. If no more than 12% of them improved on the EDSS after only nine months, that is still a huge win, and one that is likely to be followed by more healing. Get those other folks off placebo!!!! :-D :-D
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Re: Progressive MS treatment phase III study update

Post by Jimpsull »

It seems to me that more sensitive metrics may be possible if we accept that metrics have to be individualized at the edge of each patients abilities. I have been using one leg stand times to track my progress.

http://enhancedbiotintrial.blogspot.com ... t.html?m=1
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Re: Progressive MS treatment phase III study update

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Jimpsull wrote:It seems to me that more sensitive metrics may be possible if we accept that metrics have to be individualized at the edge of each patients abilities. I have been using one leg stand times to track my progress.

http://enhancedbiotintrial.blogspot.com ... t.html?m=1
But how are you separating the fact that by measuring it, you may actually be exercising it (and thereby gaining benefits / getting better at it specifically because of the physical practice) as opposed to any Biotin action/improvement? I see this as one of the problems with a non-placebo controlled trial, with n=1.
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Re: Progressive MS treatment phase III study update

Post by 1eye »

CureOrBust wrote: Jimpsull wrote:
It seems to me that more sensitive metrics may be possible if we accept that metrics have to be individualized at the edge of each patients abilities. I have been using one leg stand times to track my progress.

http://enhancedbiotintrial.blogspot.com ... t.html?m=1


But how are you separating the fact that by measuring it, you may actually be exercising it (and thereby gaining benefits / getting better at it specifically because of the physical practice) as opposed to any Biotin action/improvement? I see this as one of the problems with a non-placebo controlled trial, with n=1.
It makes no difference. If someone wants to try biotin and they get better, is that a bad thing? Oh, right, you should never exercise, it might make you healthier, and then you would be suspect.

I don't think placebos were ever necessary. The MedDay trials established safety and efficacy of biotin, and gave a clear demonstration, if anybody needed one, that placebo is time-limited and has no meaning after about 3 months. Otherwise one could never believe any result obtained with the knowledge and consent of the subject. Josef Mengele would be the only scientist you could trust...

More trials and related investigations will undoubtedly occur. They have warned that the use of high dose biotin may interfere with the results of tests. Jimpsull can't make medical decisions based on conventional tests like thyroid, unless he has data on what effects biotin may have had on them.

Doctors will always be the last to admit someone might be right without their blessing. Let all the trials of one begin. The subjects of such experiments are the only ones who will accept them anyway.
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Re: Progressive MS treatment phase III study update

Post by Jimpsull »

There is certainly a risk of placebo effect. Regarding the excercise aspect of the 1 leg stand I would say it's minimal. I have plateaued on my workouts (excercise bike and rowing machine) and don't think significant strengthening is occurring.

It could be related to technique - but why am I learning to balance better on left verses right? I am not really looking for incremental changes though - which I agree will be debatable. I hope for 1 leg stand to become a meaningless metric - I'd like to measure how far I can hop on each leg. If I get to that point I will have surpassed reasonable expectations of a placebo effect.
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Re: Progressive MS treatment phase III study update

Post by CureOrBust »

1eye wrote:It makes no difference. If someone wants to try biotin and they get better, is that a bad thing? Oh, right, you should never exercise, it might make you healthier, and then you would be suspect.

I don't think placebos were ever necessary. The MedDay trials established safety and efficacy of biotin, and gave a clear demonstration, if anybody needed one, that placebo is time-limited and has no meaning after about 3 months. Otherwise one could never believe any result obtained with the knowledge and consent of the subject. Josef Mengele would be the only scientist you could trust...
You have completely missed my point, and then gone off on a rant. I am not talking about a placebo effect. I am saying that measuring the "primary outcome" changes the outcome because he is exercising the measure, and its normal human physiology to improve at something that is exercised. A placebo branch of a trial can be for more than the simple and well known "placebo effect".
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Re: Progressive MS treatment phase III study update

Post by Jimpsull »

I understand your point COB, but the exercise I get via the OLS is a fraction of my total exercise which has already reached a steady state.

The incremental exercise the left leg is getting is also the same as what the right is getting. It seems plausible that there could be remyelination beginning to occur in a spot that impacts the left leg but not the right.
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Re: Progressive MS treatment phase III study update

Post by PointsNorth »

Sorry if this was posted already. I thought that the price was good. Capsule

Biotin powder

http://purebulk.com/biotin-pure/
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Re: Progressive MS treatment phase III study update

Post by NHE »

PointsNorth wrote:Sorry if this was posted already. I thought that the price was good. Capsule

Biotin powder

http://purebulk.com/biotin-pure/
So a 10g bag for $36.75 would last 33 days at 300 mg/day.
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