NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   High dose Biotin for Progressive MS (https://www.neurotalk.org/multiple-sclerosis/231305-dose-biotin-progressive-ms.html)

February 01-19-2016 01:38 PM

High dose Biotin for Progressive MS
 
The initial study showed great results for taking high dose, 300 mgs, of biotin to improve progressive ms. They are running blind studies now.

The high dose is prescribed by a doctor for a compounding pharmacy to make.

It is taken along with b complex because of the cofactor balance.

Both run around a $100.00 per month and are not covered by insurance.

This is the study:

http://www.sciencedirect.com/science...11034815000061

The B complex should be included with the biotin. This is one of the places to get it. I'm not sure on the dosages yet. I am still looking into it for cidp.

http://www.synergyblends.com/synergy-b.html

Starznight 01-19-2016 11:42 PM

That's so weird, I had just come across this the other day. It's actually in phase III testing so if it continues to show promise it could be heading to the general population sooner rather than later. They're now also testing high doses of biotin on optic neurosis to see if it leads to any improvement in common visual impairments with MS.

The study did warn however not to just run out and buy a bunch of OTC biotin supplements as it's not the same quality as the pharmaceutical pills they're working on and even popping them like skittles won't gain the same benefit. But I have to say as treatments go, I'd much rather be taking something on a wing and prayer that will make my hair grow longer and smoother, knock out cellulite, harden nails, and boost my metabolism over any of the other medications currently out there.

I'll take a size 6 with Rapunzel's hair any day over a size 16, with welts peppering my body. Even if it doesn't help with the MS anymore than the Copaxone doesn't seem to be helping.

kiwi33 01-20-2016 02:20 AM

February, thank you for that link - it is a very interesting paper.

Here is another free-access paper from the same group http://www.sciencedirect.com/science...28390815300733 and here is the Abstract of another paper http://www.ncbi.nlm.nih.gov/pubmed/26699811.

They all seem to be arguing the same plausible biochemical point; biotin may leading to enhanced activity of acetylCoA carboxylase (which catalyses the first step in fatty acid biosynthesis) as well as pyruvate carboxylase and 3-methylcrotonyl-CoA carboxylase which, in different ways, can lead to increased ATP production.

I hope that larger double-blind studies confirm these reports.

February, as an aside "The B complex should be included with the biotin." - none of the papers mention this - can you explain more?

Kitty 01-20-2016 02:49 PM

I just started taking biotin in a hair/skin/nails formula (Nature's Bounty Optimal Solutions). My fingernails are growing like wildfire but I got it specifically for my hair. It's getting so thin and lifeless.

The supplement I'm taking has 5,000 mcg of Biotin. I take a B Complex (actually 2 of them) every day along with Vitamin C (1,000 mg). The supplement also has lots of vitamins in it, too.

I'd be interested in what becomes of this study. How many mgs does 5,000 mcgs equal? :confused:

February 01-20-2016 03:04 PM

Starznight, Me too. I have a shelf life and would rather grow hair instead welts too. I hope I can get a prescription from my neuro or Integrated dr. The dose seems crazy high. I called the pharmacists to get answers to Kiwi's question. I also asked about starting with a lesser dose, he said the minimum is 100mgs. I wish I knew how the mgs are established. I am still gathering info. My cousin started on it 2 weeks ago. He is taking the 300mgs with the synergy blend. He has been at the stage of needing 24/7 care for a few years. He's hopeful. His neuro was very excited so I assumed the trial was further than I was able to verify. I'm really glad to see it's phase 3, thank you.
I'll keep his progress posted.

Kitty 01-20-2016 03:17 PM

Quote:

Originally Posted by February (Post 1194516)
Starznight, Me too. I have a shelf life and would rather grow hair instead welts too. I hope I can get a prescription from my neuro or Integrated dr. The dose seems crazy high. I called the pharmacists to get answers to Kiwi's question. I also asked about starting with a lesser dose, he said the minimum is 100mgs. I wish I knew how the mgs are established. I am still gathering info. My cousin started on it 2 weeks ago. He is taking the 300mgs with the synergy blend. He has been at the stage of needing 24/7 care for a few years. He's hopeful. His neuro was very excited so I assumed the trial was further than I was able to verify. I'm really glad to see it's phase 3, thank you.
I'll keep his progress posted.

I pray he does well with the study. That would be an awesome advance for MS research.

February 01-20-2016 03:24 PM

Kiwi, I am so glad you asked. I learned about this second hand from my cousin. His wife explained that the B Synergy had to be taken with the biotin for balance. I assumed that it was correct because I have heard this from other sources. I called the pharmacy to get more details. Both the neuro and the pharmacist believe that other b's in high, mgs- dose, are necessary for the balance of the b metabolism. It guards against any of them being insufficient or deficient as well. The pharmacist explained that the standards of dosing are too low, especially for someone with ms. As far as the b's in concert he didn't really give me any more specifics, even when I pressed him for more detail. He did say that there was no charge for the b synergy which means that the biotin alone will run $100.00 with or without it for what it's worth. He genuinely seemed to just want a good outcome and believed in the addition of the B Synergy, which is a proprietary blend.
I don't know, what do you think?

February 01-20-2016 03:56 PM

Thank you Kitty, much appreciated. I have noticed great improvements too when I started taking biotin. I am nowhere near high dose and wonder if this is one of the instances where more means more. The doses seem scary high. I would think good kidneys are required.

300mgs is = to 300,000 mcgs

If I have my math right, it would mean you taking 60 capsules of your 5000mcgs, every day

SallyC 01-24-2016 12:27 PM

I wonder if the Bi.otin regimen is just for RRMS or would do anything for me.?
,
Happy it seems to be helping you all!:grouphug:[/QUOTE]

mrsD 01-24-2016 12:57 PM

There is a study on PubMed where 10mg a day of biotin helped a patient with burning mouth syndrome.

I've been using 7,500mcg (7.5mg) off and on in bursts of 3 months or so on, then off...for 2 years now. I find it very helpful for my nerve pain. It is very good for strengthening the skin and hair too. I get mine at Puritan's Pride.

Biotin uses the same transporter as alpha lipoic acid. So if you take that supplement also, space them about 12 hrs apart.

I can't really comment on these mega doses however in the 100's of mg area. I haven't see papers on that yet.

But here is the updated monograph from Linus Pauling Institute:
http://lpi.oregonstate.edu/mic/vitamins/biotin

It has a comment on the MS use so scroll down to "disease treatment" section.
There are some really helpful schematic diagrams for
the biochemical importance and uses of biotin on this monograph.


All times are GMT -5. The time now is 10:37 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.