Where is the interest in the Biotin studies?

[emwojcik]

PPMS and tired

Thanks for your responses. I appreciate them more than you all can imagine. The reason for my excitement is simply because this is an attempt to treat 'progressive MS', which is my dx. This 'biotin' use is significant to me because it is the first time that there has been any physical improvement shown in measurable data in 'progressive MSer's.
Yes, it is possible that the data was manipulated by the researchers. That would be a 'dirty pool' . I hope that this turns into a 'real game changer' ! Hey! This mic is on !

I was dx'd at the end of 2013 as PPMS, and I have to say I"m not super-excited (yet) about the Biotin, and not just because I'm jaded. The study I saw, at least, indicated that only 12.6% of subjects responded at all to the massive dose of Biotin--that's a small number and my odds of being in the "lucky" percentage of any group have always been low.

Because so little has been discovered for PPMS, I feel like all I've heard since my dx is that somehow I must not have enough vitamins in my diet--even though I've always tested through the roof on B, D, and other levels and am/was super-healthy: nonsmoker, runner (not anymore of course, but I still do cardio everyday), vegetarian, serious about supplements/acupuncture/PT. I'm just getting tired of breakthroughs that depend on my having been "deficient" (literally or figuratively)--as though PPMS is my fault because I didn't eat enough kale or something.

I'm cautiously interested in the biotin trial, but I've also decided to be wary of trials that make me feel like this dx is all my fault. My psyche, at least, needs that break until something more substantial is published.

[JerryD]

12.6% is still better than 0%. I hold out 'hope ' that this slight improvement will lead to more substantive treatments. As it is, MedDay is in trials to treat ON with md1003. The same drug that was studied for progressive MS.

[jreagan70]

The study I saw, at least, indicated that only 12.6% of subjects responded at all to the massive dose of Biotin

What study did you see? There has apparently been only one study, and that's the one for which the results were just released that caused all the hoopla.

In that pilot study, "91.3% of SPMS or PPMS patients improved clinically with high doses of biotin."

http://www.msard-journal.com/article...006-1/fulltext

[msgijo]

Jerry, I had to go to pharmacy today and I asked them about Vit. H (or Biotin). I explained that I could find some in the mcg dosage, but that I wanted it in the mg dosage, and that I wasn't even sure how much was actual Vit H vs fillers. I asked them to look into it.

They are great there and immediately got on the computer and said there was one company that they ordered from but it only came in like 3 mg tabs. They can however order it in powder form and the compounding side could put it in capsules for me - with a prescription .

Looks like this is going to be an uphill battle to obtain w/o a medical professional on-board. Trials are looking like the best option for now.

[emwojcik]

What study did you see? There has apparently been only one study, and that's the one for which the results were just released that caused all the hoopla.

In that pilot study, "91.3% of SPMS or PPMS patients improved clinically with high doses of biotin."

http://www.msard-journal.com/article...006-1/fulltext

The study I was referring to was cited by the National MS Society--a clinical trial in France with 154 participants: http://www.nationalmssociety.org/Abo...-Myelin-Repair,

I don't mean to be a downer--as I said, I'm cautiously interested--but the study you cite only had 23 people in it, and was an uncontrolled initial investigation. As someone whose ON is threatening to make it so I can't drive--or do my job, which is editing--believe me, I want this to be a breakthrough. But I'm waiting to get hopeful until the double-blind, controlled trial results are in.

[jreagan70]

The study I was referring to was cited by the National MS Society--a clinical trial in France with 154 participants: http://www.nationalmssociety.org/Abo...-Myelin-Repair,

Thank you for that. There apparently have been then at least two studies, released strangely close together. The small pilot study gave such good results that it isn't surprising that more studies have been, and are being, done. I guess it isn't a surprise that it isn't until larger studies are done that the trends develop. In this case, the trend seems to be that the results aren't as good as in the pilot study. As an example, the PML issue with Tysabri didn't come to light until the clinical trials were over and the drug went into the larger population.