High-dose biotin "not associated" with a clear improvement in disability in SPMS

[ActiveMSers]

I was part of a trial testing daily large doses of biotin a few years ago. It didn't improve my disability, but it did give me headaches and worry my primary care doc (it artificially throws off thyroid numbers). But the jury is still out on slowing MS. So follow whatever your doc recommends, just keep expectations in check. -D

Mult Scler. 2019 Dec 17:1352458519894713. doi: 10.1177/1352458519894713. [Epub ahead of print]

High-dose biotin in progressive multiple sclerosis: A prospective study of 178 patients in routine clinical practice.

Couloume L, Barbin L, Leray E, et al

Abstract

BACKGROUND:
A recent controlled trial suggested that high-dose biotin supplementation reverses disability progression in patients with progressive multiple sclerosis.

OBJECTIVE:
To analyze the impact of high-dose biotin in routine clinical practice on disability progression at 12 months.

METHODS:
Progressive multiple sclerosis patients who started high-dose biotin at Nantes or Rennes Hospital between 3 June 2015 and 15 September 2017 were included in this prospective study. Disability outcome measures, patient-reported outcome measures, relapses, magnetic resonance imaging (MRI) data, and adverse events were collected at baseline, 6, and 12 months.

RESULTS:
A total of 178 patients were included. At baseline, patients were 52.0 ± 9.4 years old, mean Expanded Disability Status Scale (EDSS) score was 6.1 ± 1.3, mean disease duration was 16.9 ± 9.5 years. At 12 months, 3.8% of the patients had an improved EDSS score. Regarding the other disability scales, scores either remained stable or increased significantly. In total, 47.4% of the patients described stability, 27.6% felt an improvement, and 25% described a worsening. Four patients (2.2%) had a relapse. Of the 74 patients (41.6%) who underwent an MRI, 20 (27.0%) had new T2 lesions, 8 (10.8%) had gadolinium-enhancing lesions. Twenty-five (14%) reported adverse event.

CONCLUSION:
In this study, high-dose biotin did not seem to be associated with a clear improvement in disability.

[Veronica]

Just commenting on my personal journey with high dose Biotin. Been consistently on it since sometime in 2013… so,for “many years” at this point.

This study concludes that it is not associated with a “clear” improvement in disability. And I get that, but for me, Biotin helps….really helps….. There has been such a subtle change for me, and it has been so gradual over all these years. I couldn’t say there is a “clear” improvement, but I can say that those days of feeling as if I am moving through mud just don’t happen anymore.

No, my walking is not better, which was the hope I had when I started, but I ain’t quitting it! I can only give anecdotal data here, but I just “feel” more connected.

At times I know I have gone through periods of my balance being “better” but that admittedly has waxed and waned . But this study had me reflect back on these past years and I can pinpoint times when I was under a lot of ongoing stress, be it emotional or a heavy period of physical activity. Before and during "Early Biotin" days, I would have quite an abrupt drain of energy and ability, and at times it caused me to just cancel social events and left me physically wobbly and really drained. I see that now my physical response to those type of intense situations has changed over these past years, and I am much better able to not “crash and burn” but rather “come in for a slow landing” when I get thru such events.

I have not changed my DMD through that time, have not made any major changes in my diet or how I exercise/stretch. My weight has been pretty stable.Stable MRIs every 6 mos. And I didn’t get 7 years younger, but older, of course.

I can only conclude that it is the Biotin that has had this effect on my body. Though not a “clear” improvement, it has so helped the quality of my life to have the “mud slogging” and the “crash and burn” effect dissipate so much. Took a lot of time, but worth it for me.

Also educated my GP on my needing to go off this for several days before thyroid functioning lab work. At this point, I go off it for about 4 days and my labs haven’t been wonky like they were when I just stayed on it that first time. Initially when I went off, the “mud’ moments came back rather quickly, but not any more. What more can I say?

[ActiveMSers]

Veronica, thanks so much for this! I was a bit harsh in my earlier statements, I think partly due to having just read about MSers shunning all DMTs to solely take supplements and diet. So getting this perspective has been super helpful. I'm so glad it seems to be helping you and others.

[GoatHerder]

Nice to hear from someone who has tried it, thanks for that!