BIOTIN -- lets blog our experiences here on Biotin

[Sunshine]

Still shelving Biotin for now so I don't confuse it with the IVIG. The scale is so cute and scientific though :)

[Lazarus]

I have not been here much but this thread is interesting. (I have been working full days on the farm and really filling in for our lack of farm workers and helping my husband who is not so strong now).

Actually, the farm work I am doing is my point! I am really working full days. hard work. My ability to function for hours with no rest is new. And I sleep and awake recovered. I am surprisingly better. Not sure why.

I am taking daily doses of baclofen and baby aspirin. On Saturdays at farmers market I still am near collapse by the end but that is 9 hours of work and 7 of them are in intense heat.

*****updated to add....yes, I am on rituxan and we have increased the frequency of infusions from every 7 to 8 months to 6 months between infusions.
I take ampyra, oxybutinin, bbaclofen,


I am interested in Biotin but right now things are spectacular in this very narrowed existence of farm work life.

[stillstANNding]

Linda, are you still on Rituxan? Or did you mean that Baclofen and aspirin are all you take?

ANN

[agate]

Linda, you must be a hardy soul. Even people without MS would have problems with

...9 hours of work and 7 of them are in intense heat.

[Lazarus]

Added answer to original post.
Yes.

[Sunshine]

Must be the Rituxan. Wonderful!

[SalpalSally]

Is Rytuxan a pill or. Shot?

[SuzE-Q]

Is this the same results and elaboration of what was presented at the earlier AAN or a new study?

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Mult Scler. 2016 Sep 1. pii: 1352458516667568. [Epub ahead of print]

MD1003 (high-dose biotin) for the treatment of progressive multiple sclerosis: A randomised, double-blind, placebo-controlled study.

Tourbah A1, Lebrun-Frenay C2, Edan G3, Clanet M4, Papeix C5, Vukusic S6, De Sèze J7, Debouverie M8, Gout O9, Clavelou P10, Defer G11, Laplaud DA12, Moreau T13, Labauge P14, Brochet B15, Sedel F16, Pelletier J17; MS-SPI study group.

Author information
Abstract
BACKGROUND:
Treatment with MD1003 (high-dose biotin) showed promising results in progressive multiple sclerosis (MS) in a pilot open-label study.

OBJECTIVE:
To confirm the efficacy and safety of MD1003 in progressive MS in a double-blind, placebo-controlled study.

METHODS:
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. The primary endpoint was the proportion of patients with disability reversal at month 9, confirmed at month 12, defined as an EDSS decrease of ⩾1 point (⩾0.5 for EDSS 6-7) or a ⩾20% decrease in timed 25-foot walk time compared with the best baseline among screening or randomisation visits.

RESULTS:
A total of 13 (12.6%) MD1003-treated patients achieved the primary endpoint versus none of the placebo-treated patients (p = 0.005). MD1003 treatment also reduced EDSS progression and improved clinical impression of change compared with placebo. Efficacy was maintained over follow-up, and the safety profile of MD1003 was similar to that of placebo.

CONCLUSION:
MD1003 achieves sustained reversal of MS-related disability in a subset of patients with progressive MS and is well tolerated.

[SalpalSally]

Wow that's good!!!

[agate]

SuzE-Q, the abstract you posted seems to be the follow-up to the study described in the AAN abstract that I posted earlier in this thread. I'm not sure why the AAN paper mentions 300 mg/day of high-dose biotin as the dose given to the subjects but your article mentions 100 mg/day. Maybe they changed the dosage. Or maybe of those figures is a misprint.

The study is being done by Medday, a drug company that produces biotin. Also, it's a open-label study, and I understand that open-label studies aren't very meaningful.

I'm not saying that the study is worthless--just that we have to keep in mind that it might reflect possible bias on the part of the researchers. Their results might be valid anyway.

[Virginia]

Agate, am I reading this wrong or does it say 100 mg thrice daily?

[SuzE-Q]

Hi Joan,

It says it WAS a double blinded placebo study, with all participants being put onto the active drug arm partway through.

Yes, it was 100mg 3x/day.

[agate]

Agate, am I reading this wrong or does it say 100 mg thrice daily?

Virginia, I missed the "thrice daily"--thank you for catching that. So the dosage was the same and this is undoubtedly a followup to the AAN paper. Now that the study is completed, these are the results--in the paper SuzE-Q has just posted.

[SalpalSally]

They are trying to fool us!

[Virginia]

So, should I start taking Biotin? How many on here are on it?