Biotin Trial in SPMS and PPMS

[Veronica]

Thanks for the reminder to post here, Teena Marie. It has been a full three months at this point. Up until the time of the relapse I was still feeling the subtle improvements that I wrote about before. Not earth shattering, and nothing that anyone else might notice, but I do feel that it has made a difference in energy throughout the day...slightly...... I take the powder at the 100 mg 3x daily..not difficult to measure out after all....I even traveled with it and the scale without an issue. No side affects at all for me... I figure I am just staying on it, and am prepared to be on it for the long haul... I'll keep giving updates every few months or if/when there is something more noteworthy to report. And you? Have you continued it? Up to 300mg at this point?

[mvargas]

After taking Biotin for about six months I have had positive changes in my vision and bladder issues. Vision in my good eye improved from 20/30 to 20/25 when looking through a pinhole, also slight improvement was noted during a visual field test.
Bladder issues went from bathroom visits every two hours for the past 18 years to now an average of four hours between visits. I have also learned that the improvements in the bladder issues went away a few weeks after temporarily stopping the Biotin. It is so good to have these improvements!

[MSLazarus]

Thank you for posting

Actually, thank you both for sharing your information/experience with biotin. I will follow your future posts.

[teena marie]

I, too, have started Biotin although I am still not at full dose. My neurologist wanted to go very slowly so it will only be this week that I'll be at full dose of 300mg daily. Overall, I feel good and maybe a bit more energy and feelings of good cheer. From the study results, it seems positive changes are noticed after a few months.

To be continued,

Teena Marie

[teena marie]

Hello all,

Wondering about Biotin results from all of those taking it. I was on for 6 months and just recently stopped to see if there is any difference. Can't really say anything one way or another. Trial results say it may take 9-12 months to kick in. Also, the biggest result is to stop progression. So, not sure what to think. Maybe the upcoming ECTRIMS meeting will have an update from Medday.

To be continued.

Teena Marie

[Suebee]

TM, how timely your post! After worrying my face and hair had lost that youthful glow when I looked in the mirror the other day, I made a spontaneous purchase at the drug store - on sale Biotin "gummy" supplement by nature's bounty. It promised to make my hair "lustrous" and nails and skin "vibrant" in one "delicious strawberry flavored gummy". I quickly forked over my money and made a mental note to look up your posts on the strength beneficial for MS. They contain 2,500 mcg per 2 gummies. So if that equals 2.5 mg, I'm way below the suggested daily dose for helping MS. So now I get the need to use the powder. I will see how I feel after this very small dose in the next few weeks and review all of your comments on it.

On a side note, my gummies are delicious but I can not comment on any lustrous or vibrant effects after just a few doses. Has any one at the high doses found the side benefit of vibrant/lustrous hair,skin, nails?

[teena marie]

Yes, Suebee. It does help hair and nails.

[Veronica]

Been meaning to post here for awhile now. I've been on the 300 mgs for the past 11 months at this point. As I felt before, it continues to be subtle. But I feel that it is helping me with motor fatigue, and endurance. I just don't feel as if I am moving through mud as often as I used to. Still of course have these feelings with too much heat and humidity, or when I haven't had enough sleep, but in general, I just feel that it is easier to move. I have switched from the powder to capsules so dosing is simple, and controlled. 100mg three times daily. Added bonus is stronger nails. Maybe my hair is abit fuller. I'm planning on staying on this, especially as Teena Marie mentioned, people talk about improvements after being on Biotin high dose for 9-12 months, and I have read that this is more like 12-18 months. No side effects, so what the heck? I have nothing to lose....

[Veronica]

Just a quick update here. Biotin affects lab results for thyroid function, and I have hypothyroidism and am on synthroid for this. I needed a new Rx recently and thought they wanted blood work first, so I very reluctantly went off for several days... Gotta say that I felt the difference...went back to having those "being in sludge" days again, and heat and humidity were not factoring in. I was thrilled when my doc agreed to fill it once more before blood work will be needed, so I immediately went back on. And "Sludge days" disappeared again.. Now I have to plot my 7 days off the biotin for a time when I am prepared for not liking how I feel... So glad I am on this....

[Suebee]

Veronica, thank you for the update. Your experience is motivating me to try biotin. I feel like sludge. . I can't afford an RX biotin so I researched the mail order co re purity and safety. From I found, it does seem there are quality controls and I didn't find any FDA warning letters to co. re biotin's purity or safety issues. I appreciate your info a lot.

On aside, is your thyroid immune related? I have odd thyroid results but never enough to make doctors want to treat with meds. A friend suggested I go to a woman's thyroid specialist in the area- interpretation of blood work apparently varies. I wonder if thyroid issues are common with people with MS?

[Veronica]

Suebee, I was dx'ed with hypothyroidism several years before the MS dx....didn't have any symptoms..it was just picked up on blood work. It's been such a benign thing with me, never felt any change when I started meds as I never felt any problem. So I just pop my pill every AM and that is that.... I have no idea if it is immune related....

[Suebee]

Veronica, Glad your thyroid is easily managed! There is a strong connection between thyroid issues and MS but its my understanding that is a much as medical science currently knows...

"Hashimoto's disease, Graves' disease and multiple sclerosis are autoimmune disorders that may share similar mechanisms for the pathogenesis of the dysregulation of their self immunity. This study has shown that there is a significant co-occurrence in patients with MS and Graves' disease, and a marginal co-occurrence in patients with MS and HT disease"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1308850/

Thanks again for the info!

[AMFADVENTURES]

Biotin Factoid

An interesting factoid about biotin. Biotin, vitamin H, is required in a couple of steps involved in the Krebs Cycle. The Krebs Cycle is a series of chemical reactions at the cellular level which results in the aerobic production of adenosine triphosphate or ATP, and other biproducts. ATP is the molecule directly responsible for cell function, causing cells to energise or activate, ie. a muscle cell to contract or a neuron to transmit, etc. An increased level of biotin can cause in an increase in ATP production which could result in better neural transmission even in demylinated neurons.

From the Fall MS Summit compliments of The Rocky Mountain MS Center.

[Suebee]

Biotin Trial Recruiting Now!

Hi, I came across the recruitment info for the latest Biotin Trial info on Nat'l MS website.

Here is description:


Eligibility and Details: Participants are aged 18-65 years old with a diagnosis of primary or secondary progressive MS. Participants can remain on existing disease-modifying treatments, if treatment has been stable for at least 90 days prior to enrollment. Further criteria are available from the contact below.

Participants are being randomly assigned to receive a capsule of MD1003 100 mg or a placebo capsule three times daily for 15 months. When all study participants have completed 15 months of double-blind therapy, all patient may enter an open label extension where all participants will receive MD1003 100 mg three times daily for 12 months.


The primary outcome being measured is the proportion of participants who improve on either the EDSS scale that measures disability or a test that measures mobility. Other outcomes being measured include cognitive function, quality of life, and activity on MRI scans.

Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please visit www.spi2study.com or call Dr. Robert Lasser at 617-378-8701.

[Veronica]

"You are actually better"..... I heard this from my neurologist yesterday....!!!! Really.....

I've been on the 100 mg/3x daily for just about two years now. I had been feeling just generally stronger for this past spring/summer ( apart from heat/humidity crap). My right leg (the weaker one)...especially the ankle and foot just seemed to last longer when I worked it. And around May, during a PT session, my therapist said my ankle flexion was better than he had seen it before.

But NEVER has my neuro made such a comment. He said he saw this in all the tests he did on my leg strength and ankle flexion. Said I was much stronger on those when he wanted me to resist his pull, and I even knew it when he asked me to go up on the balls of my feet. I knew that my connection was there to really DO this, and walk a few steps on the balls. And as soon as I did it, he made his comment " You are actually better..."..... better than when I saw him six months ago.

I just about floated on my 115 mile drive home. It really was the shortest ride!

We feel it is a result of a combination of Biotin, probably my walking barefoot more around the house, walking with weights of bags and pots of garden stuff, and the years of doing my MS exercises.

But Biotin probably is the main factor here. He also said that they have seen that the vast majority of people have NOT had the results that the researchers had hoped for, but that obviously I have had those results. Wow.... just wow.... That's all the motivation I need!