Riding the High-Dose Biotin Train for Progressive MS

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biotin for MS


I knew of no available treatment options for my Primary Progressive MS, so when I heard about the pure High Dose Biotin Protocol I jumped on board!

The protocol, created by MedDay in France, revolves around the vitamin Biotin (aka, vitamin B7 or H). It is recommended that the patient take 300 MG of pure Biotin per day. The clinical trial, called MS-SPI, involved 154 people with Primary Progressive MS or Secondary Progressive MS . The patients either received the Biotin pill or a placebo over 48 weeks.

The results showed that 12.6% of those given the high-dose Biotin showed improvement in disability on either the EDSS (Expanded Disability Status Scale) score or a timed walk. None of those on the placebo had improvement. There were no serious side effects noted (high-dose Biotin was also tested in relapsing and progressive MS patients with fixed visual loss in the MS-ON study). An article on both trials is available through this link.

For me, this was great news!

I discussed the Biotin protocol with my primary doctor and my neurologist, and they did not have any objections, so I started the protocol on March 9, 2016, and I have been following it for the last 5½ months.

For the first couple of months, I suffered from headaches. I usually don’t have headaches, so I knew that it was most likely from the Biotin. I have since learned that with Biotin you need to drink lots of water. Since I started doing that, the headaches have decreased greatly.

Also, I noticed the cramps and spasticity were increasing in my legs. It was extremely painful!

Now, I feel that my leg cramps and spasms are slowly improving.

I was also starting to have pain in my spine before the protocol, and now the pain is completely gone. I am able to walk a little better and have a little more energy. Not a lot more, but I will take anything I can get!

The only downside I attribute to the high-dose Biotin is that I occasionally have terrible heartburn that I didn’t have before. Hopefully, that will disappear over time.

Is Biotin the help I am looking for? I’m not sure, but at this moment it is the only option I have and it seems to be helping! I am encouraged, and on the horizon there is even more promise for PPMS.

In 2017, the drug ocrelizumab (Ocrevus, Roche) may very well make its appearance. With it comes the claims of possibly halting the progression of PPMS.

Also, HCST (hematopoietic stem cell transplants) are very exciting, with the clinical trial results stating that it could be the first MS therapy to reverse disability! There are risks with each treatment, but do the benefits outweigh the risks?

Definitely more research for me to do, but I am very optimistic of what the future holds in the world of MS research and treatment!

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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Debi is a retired Admissions and Marketing Director and currently resides in Oregon. She is married and the Mother of three grown children and has three Grandchildren. She was diagnosed with PPMS in 2010. She hopes to help and inspire others that are also dealing with MS.
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  1. Roy Apuzzo says:

    Had a Neurology MS Doctor write me the prescription but can not find any pharmacy to fill at reasonable price. They say @ $500/month for 100mg tablet 3 times per day. Way too expensive for the average MS patient.
    Would love to try since have progressive MS with back and leg pain and paralyzes.
    Please advise

    • rick mclellan says:

      Hi Roy my wife has progressive MS and is taking biotin 100mg three times a day, not sure where you are located but she is getting it from a pharmacy in Old Bridge NJ website is http://www.highdosebiotin.net . they ship i believe UPS. they are terrific, nice and very helpful. not sure of the price, but no where near $500. very very reasonable.

      • Roy Apuzzo says:

        I will look into it.
        I live in Las Vegas, NV.
        Any other supplements she takes for progressive MS and how is all of them working to solve any of her disability condition.
        I have a lesion on left side of Brain and lesions on C and T Spine causing me to have my right leg to be paralyzed.
        Neurology Doctor Dr. Kinkel at UCSD prescribed this medication.

        • Joyce Papi says:

          Roy, Dr. Kinkel was my doctor in Boston until he moved out west. Loved him! Tell him Joyce Papi says hi and I, too am taking biotin since last October. Also, I take the powder because it is cheaper than the capsules. This website has cost info on the capsules posted somewhere, not sure where though. Good luck!

    • Debi WilsonDebi Wilson says:

      There is a great group on Facebook, it is called Biotin for progressive MS. They also have an instruction page that tells everything about the protocol. They also answer questions it’s a very good group.
      It is pretty inexpensive to make the capsules yourself and they explain all of that on their instruction page.
      Wishing you the best thanks for your comments!

      • Roy Apuzzo says:

        Ed says:

        August 29, 2016 at 6:11 PM

        Debi: Thanks for the info: What do you thinks about buying capsules for $50.00 per month instead of pure bulk powder?

        Roy, join the “Biotin For Progressive MS” Facebook group. There are currently 6 suppliers if the correct 100mg Biotin capsules, and the cost per month can be as low as $50.00 per month.

    • Ed says:

      Roy, join the “Biotin For Progressive MS” Facebook group. There are currently 6 suppliers if the correct 100mg Biotin capsules, and the cost per month can be as low as $50.00 per month.

    • Lynn says:


      I’m using Kings Compound Pharma in Irvine, California, their great. They’ll ship anywhere in the US, their charge is $135 for 300mg for a 30 supply. If you order a 2 or 3 or more month supply at one time he will discount. I’ve only been on the biotin for one month, can’t say if I feel a difference yet but I hope so. Good luck to you

      Kings (949) 387-0780

    • Debi WilsonDebi Wilson says:

      I take 100 MG pure Biotin capsules 3 x a day. It has to be pure not the 1%. The biotin for progressive MS page on Facebook explains it all. Thanks for your question!

  2. Barbara Kidder says:

    Thank you for your ‘update’ article on Biotin.
    You also mention Ocrelizumab. Some people who have been following the development of drugs for PPMS believe that it is almost identical to Retuximab, which will be losing its patent soon and will not be cost effective for its maker.
    What do you think about this?

    • Debi WilsonDebi Wilson says:

      Thanks for your comments and question Barb,
      I didn’t mention Retuximab
      for the reason you mentioned. As far as Ocrelizumab is concerned and the similarities to Retuximab I choose to remain optimistic. We will have to wait and see.
      Do you have PPMS, if so what are you trying anything now?

  3. Peggy Sacco says:

    Thank you soso much
    for your post. From the
    very beginning I was
    diagnosed with PPMS
    in 2001.
    I had no idea of this drug.
    It is so encouraging for
    me to read the post from
    others with PPMS.
    I will join the FB site and
    not feel alone. Don’t know
    anyone else with PPMS.
    Gratefully yours,

    • Debi WilsonDebi Wilson says:

      Hi Peggy,
      I am so glad you are going to join the FB Group! It is very comforting to hear what others all over the world are saying about their PPMS. You can ask questions and you are definitely not alone!
      Thank-you for your comments!

  4. Constance Chevalier says:

    Hi Debi. I also have PPMS and have been taking the pure biotin powder for over a year, no problems. I use all helpful info from the fb site as well. Thanks for the article.

      • Roy Apuzzo says:

        Debi: When I go to PureBulk website and look at price of Pure Biotin it is $189.96 for 100g. They say that is what you need for 300mg per day for 90 days.
        Can you possible call me @ 702-233-6854to explain how to go to Facebook link @ making capsules.

  5. brett says:

    hi all

    when looking at your supplements make sure you do some homework and maths.
    most of them list the active ingredient in micrograms, not milligrams. so 1000 microgram’s of active ingredient is only 1 mg.
    Meddays product is 300milligrams of active ingredient, so 300000 micrograms.
    I struggled to find a commercial product that had more than 20000 micrograms of actual biotin

  6. Hi! I’m JoAnne and have been diagnosed with SPMS in about 2010. I was originally DX’d in 1987. I have been in a clinical trial @ UCLA for SPMS taking IBUDILAST, but it’s a Phase II, double-blind study and I don’t know if I’ve had the real thing.it will be revealed in the first quarter of 2017. I’m glad to know about this supplement and will research it.Thanks.

    • Debi WilsonDebi Wilson says:

      Great, definitely check with your doctors first. Plus The Biotin for progressive MS group on Facebook is a great resource for instruction and information! Thanks for your comments good luck to you!

  7. Anthony says:

    Hi, does anyone know if the Biotin supplements from Johnson Compounding and Wellness in Massachusetts is pure? Their other name is Natural Creations Pharmacy. And any other opinions on the Biotin from this store? Thank you!

    • Debi WilsonDebi Wilson says:

      Hi Anthony
      It’s probably best to just call the company you’re interested in and ask about their product to make sure. Biotin from the store is usually just 1% and not pure.
      Thanks for your comments !

      • Anthony says:

        Thank you for your reply Debi. I was just wondering what you meant by it cannot be 1%? And do you think the capsules that are 1% are not as helpful? Thanks!!

  8. Harry Crawford says:

    This is a new option that I plan to try. As far as stem cell treatment in this country, good luck. The FDA will suppress this as long as possible due to the damage it would do to big pharmaceutical companies. Doesn’t matter how much it would help those of us with MS or any other disease this would help. Many other countries have done this treatment for 10 years plus with awesome results. But why would the FDA take their trial and treatment information for their own information, that would be entirely to inexpensive and smart. The FDA should be called the national pharmaceutical advocate organization.

  9. daan says:

    Hi guys!
    Even if MedDay is based in Francem did anyone bought Biotin in the EU? I’m currently taking 5000 MCG supplements, which is a joke compared to 300 MG. I’m in Europe and nobody seems to give 300MG of Biotin for human use, dogs are ok.

    • Debi WilsonDebi Wilson says:

      Hi Daan! I know The primary progressive MS for Biotin Group on Facebook has lots of European users of High Dose Biotin. That would be a good resource for you. Thanks for your comments.

  10. Phil Longford says:

    Hi Debi
    I am keen to try anything that might help with PPMS. Is there any problem with using other suppliments,or might they even inhibit the biotins from working? Taking a selection of Baclofen, (muscle relaxant), Vitamin D, Q10, Sea Kelp, Pomegranate extract, B Complex. Anything else worth trying?

    • Debi WilsonDebi Wilson says:

      Hi Phil,
      The Facebook group has tons of information. They can answer your questions better than I.
      Thanks for your comments! Debi

  11. Ellen says:

    Hi Deb. My husband has PPMS and has been in a wheelchair for 15 years. He takes bovine myelin, 5000 D, and other supplements. I am awaiting stem cell tx which seems too far off in this country, and am going to try the biotin. Is your “pure” biotin the same as the D-biotin in the study? I have a compound pharmacy ready to make this pharmaceutical grade, D-biotin in 100 mg capsules and sell it to us for $219 for a 90-day supply. I went to the 100 mg to incrementally get to 300 mg since my husband is sensitive to most things which is why none of the MS drugs have helped and only hurt him. I will join the FB page later today, thanks for pointing it out.

    • Debi WilsonDebi Wilson says:

      Hi Ellen,
      Yes pure Biotin is the D-Biotin from the study. I am glad you are joining the group, there is lots of information there! Thanks for your comments! Debi

  12. Ellen says:

    Does anyone on here take any B-cell or T-cell support by Ecological Formulas? If there is no support, or change to the current process of demyelination and destruction by the immune system, how can we keep those cells from destroying any regeneration of myelin and continuing the cycle of destruction? Won’t we be in the same boat if we don’t reset the immune system? Thanks.

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