Riding the High-Dose Biotin Train for Progressive 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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Comments
Gary Slatter
This might be fantastic news for PPMS or SPMS sufferers, only treatment which offers hope.
PPMS diagnosis 2001.
Debi Wilson
I think it is! Thanks for your comments!
Lynette brown
I'm lynette I'm 42 and I'm try this so I might get my balance
Jill
Excuseme Lynette, how many months does biotion work with you? You use high dose too (100-300mg per day)? Thanks for yor sharing.
Jocelyn
I am in part of the phase 3 trial in Southern California, so I do not know whether or not I am on a placebo
Debi
That is interesting Jocelyn, do you feel any difference?
Gary Slatter
I'm trying BIOTIN 10,000 to see what it does for me, So far 'I feel better' but that's completely non scientific!
Karen Brown
This article has given me great hope! I was diagnosed with PPMS last year. I was diagnosed with MS 25 years ago then to told last year that there was no treatment for me. Thanks for sharing this article.
Debi Wilson
Thank-you for you kind comments, Karen! Debi
Roy Apuzzo
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
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 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
Thanks,
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
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!
Michelle
Hi Roy,
Vitamin d is the other supplement I take.
Roy
Doctor has me taken 2000iu of D, Folic acid, Magnesium 400mg
Debi Wilson
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
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.
Debi Wilson
Ed,
Research all suppliers and then find what is best for you. That's all I can recommend. Thanks
Ed
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
Hello,
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
Linda
Bulk Supplements sells the pure biotin powder very inexpensively. Many with MS buy it online from them.
Debra lepage
What Med are you talking about. 3x a day what was the mg
Richard Giambruno
Did you try
shop.naturalcompounder.com
For biotin. $60 for bottle of 90 100mg capsules, one month supply.
Rob R.
ck out Bulk Supplements. powder form very affordable prices.
Jen
I have been taking a relatively low dose (30mg) from beauty fuel very cheap from amazon, i have had amazing results with regard to fatigue and pain, plus my hair, skin and nails are better than ever.
Id say try the highest dose you can afford and give it a gentle test. Good luck xxx
Tim Bossie
Hi Jen... that's great you're having success with biotin! Thank you for sharing your experience and how you're doing.
Erez
30 mg a day ?
Debi Wilson
The recommendation from the clinical trial is 100 MG 3 x daily. Thanks for your question! Debi
SM Crites
I just ordered biotin 100 mg capsules for 59.95 for 90. They haven't come yet. I'm taking this on my own without my doctors ok. My doctor says if she gives the diagnosis of PPMS my insurance will stop paying for treatment since they don't cover experimental drugs and NO treatment has been approved. I take ms meds but have gotten much worse. Do you continue with MS meds or only biotin?
Bob Hazlett
Roy -
Now, in March of 2017, I just started. $150 for 30 days of 300. Maybe it's come down everywhere by now.
Bob
Krystal
That's a lot of money for it, this Friday March 31st I'm getting my first bottle of Biotin at the vitamin shop 300mg for $50 try any vitamin shop around you, if not in stock ask if they can order it.
Mariana
Try to find Biotin 100 mg on Puritan.com or on Amazon.com, Vitacost.com
Deborah Bourland
My doctor recommended 300mg daily found them on Amazon ...(and they are not sold locally)from $20 to $38
Julia Carter
Bulk Supplements is where my doc sent me, you WILL need a pharmacuidical scale.
I paid about $40 for 25 gr this will last 90 days as you will need to only take 300mg the only way to measure it correctly is with a pharmaceutical scale. I bought the Gemini-20 for about $25. My doctor also recommended taking 1200mg of Alpha Lipoic Acid with food.
All together my purchase was about $125 and everything was on Amazon.
I have never had the need to measure anything in mcg or even grams so this has been a new experience for me.
Kristin
I buy from Amazon. $31.95 a bottle. Just search high dose Biotin 100 mg. It’s been working great for me, good luck
Larry
What brand is this?
Kim
Check Ace pharmacy online, you can get it as low as $35 a month.
Dave
Go on amazon. There is 300 mg and you take it one per day. Some side effects are headaches, leg cramps. Drink lots of water. Good luck.
jojo jones
How much are you taking?
Debi Wilson
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!
Melissa Michaud
Hi, where do you get your 100mg capsules from? I need to order some but can't find the 100mg ones.
cyril cook
were can I buy biotin
Debi Wilson
I buy it from Pure Bulk. It has to be Pure Biotin not the 1% purchased at the store. The Facebook group Biotin for Progressive MS explains it all. Thanks for your question!
Anthony
Hi do you know if the Biotin from Johnson compounding pharmacy in MA is pure? Thanks!
kim
Hi Debi, if I buy Biotin from pure bulk, do I need to put it in capsules or do they already come in capsules? Thank you
Debi Wilson
Hi Kim,
It will come as powder. I buy size #4 empty caps and fill them myself.
Thanks for your question!
Harry Crawford
Can you take it like Goody'S powder or no?
Debi Wilson
Hi You should consult your Dr on that. Thanks for your question .
David
Amazon very responsible priced
Barbara Kidder
Deb:
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 Wilson
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?
Michelle
Hi barb,
I'm on the trial study for Ocrelizimab. I can tell u it definitely has helped stop the progression
Roy
I tried to get into a clinical trails but got no response for this drug
Debi
That's encouraging Michelle! Thanks for your comment!
lee ayres
I have MS been on Rituximab for over 8 yrs (was not during well on interferons). Had one small non symptomatic lesion the first year and none after that! Genentech provided it to me for free through their patient assistance program. I can't say enough good things about it! Orelizumab is basically the same thing.
Peggy Sacco
Debi
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,
Peggy
Debi Wilson
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!
Constance Chevalier
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.
Debi Wilson
Great Constance! Thanks for your comments!
Roy Apuzzo
Seen some people telling of some bad side effects from Biotin.
MS getting worse, nerve pain, headaches
Roy Apuzzo
Not sure how to sign up for Facebook site for Riding the Biotin Train for MS
Roy Apuzzo
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.
Thanks
Chris
Nope, 100g is for 333 days, considering 300mg or 0,3g per day ...
brett
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
JoAnne McCormick
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 Wilson
Thank-you Joanne!
JoAnne McCormick
thanks for this info. I will research it and probably start using Biotin!
Debi Wilson
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!
Anthony
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 Wilson
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
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!!
Harry Crawford
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.
daan
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 Wilson
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.
Phil Longford
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 Wilson
Hi Phil,
The Facebook group has tons of information. They can answer your questions better than I.
Thanks for your comments! Debi
Ellen
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 Wilson
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
Sharon
Allergy ResearchGroup sels HiBiotin. 90 Hypoallergenic pills of 100mg each. Cost ranges from $33-$50 on Amazon. I just nuy more than one bottle when the price i low.
Surjit
Hi Ellen,
My name is surjit i am from india suffering from MS for last 18 years and in very bad shape due to ms disease. I want to take 300mg of biotin can you tell me is it safe to take such high dose. how is your husband IS he taking biotin Did he got any improvement of taking biotin. Please help and reply
Ellen
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.
Margaret
Nov 2016, after my 4th round of Rituxan for MS, I had a toxic reaction. After 8 days in hospital for double pneumonia, acute Respiratory failure and sepsis, all the test pointed to my RITUXN TX.
After my slow recovery, I got a second opinion as to treatment since I ran through all other treatments for PPMS.
The MS specialist suggested pure Biotin 300mg/day.
I have been taking Biotin 300mg/day. I purchased Natural Creations 100mg/90 caps pure biotin from AMAZON.
(Dr. gave me this link) https://www.amazon.com/High-Dose-Biotin-100mg-000mcg/dp/B016IRQTSU
Now, I understand I could use a compound parmancy, but even my Dr. said to just buy the powder (pharmacy cost $2.99-$700!!)
So, right now I'll do the caps ($60/90/day) and then I'll make my own.
It's only been 2/wks since I started Biotin, so I don't see much difference yet.
MS DX 2013
PPMS DX 2016
Take care all.
sheila frank
I am a RR MS going into 2nd ary PP at age 70+ demale, I am on 3.mg LDN,a gluten free diet for 40 years and almost feel normal. I started 300 mg Biotin November 1915 after reading French research info. Also at that time I had a botched wisdom tooth removal that resulted in my tongue being sewed down injuring the nerve along the edge and losing the taste on that side. Also I felt optic neuritis returning to my right eye. 1.5 year later I can now taste and the encroaching MS symptoms have receded slowly.
Heather
Excellent informative article! I have had HSCT three years ago and I am looking into options to help repair damage now that my disease has been stopped.
Mariana
I was ordered from Amazon, $50 for 90 cap 100 mg, but I found on www.puritan.com much cheaper
Steve
We found 100mg capsules 90 count on amazon for $58
Lisa Ann Hiatt
I take 3 1000 mcg a day having great tesults till i had problems it had calcium in pills cant take i found the vegan ones on amazon blue bonnet for ten bucks my nuero recommend this dosage and my energy was awesome cant wait to get pills from amazon..totally vegan...been down since had to stop the ones with calcium..
Sharon C. McDow
Hi,
Dr. Augusto Miravalle, the MS Neurology Specialist st UF Health suggested I try Hi Dose Biotin 300mg daily on 12/12/17.
I found it online (Biotin 100mg with 100 in a bottle for Breakfast, Lunch, & Supper) & I ordered from
https://store.skipspharmacy.com/
in South Florida. It’s easy to swallow & the more bottles you order, the more discounts you receive.
The pricing is very good & has free shipping too. Check it out!
Surjit
Do you get any relief in any type of symtom after having biotin i am from india suffering from MS for last 18 years and in very bad shape. Please help and reply
Jenny
I buy the high dose biotin 300MG from skipspharmacy.com for a fair price. It is working for me and I have secondary progressive MS.
in the 6 months I have been taking it so far I have:
– more energy and can walk up the stairs again and use escalators.
– I do not have to use any mobility devices because I no longer drag my left foot
– I am able to go shopping again and my left hand is getting stronger and I am now able to use it again to eat etc.
Doug
Hi Jenny, That’s great to hear. How long did it take for your physical improvements to begin? I have primary progressive MS. I have been taking high dose biotin for 3+ months. No change yet. I read that it takes 6-9 months to show improvement.
Jenny S
It usually does take about 9 months for many people but in my case I started seeing improvements in 14 days. It has now been 10 months and I have been using my left hand more and more and starting last week I have been able to walk faster and even go up the stairs faster.
Debi Wilson
That's great,Jenny!
Thank-you for sharing!
Good luck to you, Debi
Surjit
Hi Debi,
My name is surjit i am from india suffering from MS for last 18 years and in very bad shape due to ms disease. I want to take 300mg of biotin can you tell me is it safe to take such high dose. Please help and reply
Debi Wilson
Hi Surjit, I am not a Doctor so I can’t make a claim on Biotin’s safety. The amount 300 MG per day of pure biotin was set by a clinical trial in France. I along with many others have followed the high dose Biotin protocol with no adverse effects that I know of. Thanks for your question, Debi
Surjit
Hi Debi,
Many thanks for the revert. Please kindly let me know since how long are you taking this dose and have you found any improvement in your symptoms. Your answer will help me a lot as i am on wheel chair can't stand on my legs. I have also big bladder problem and can't eat with my right hand due to this ms disease. I have came to know while taking high dose of biotin one should have to drink lot of water not less than two and half liters.
Is it right ?
Just for my knowledge how much water you are taking with biotin. Please reply
Surjit
Hi Debi,
Please answer
Debi Wilson
Hi Surjit, i’m sorry for my delay in answering your questions. I was on the biotin high dose protocol for one year. The clinical trial recommended one year to one and a half years. What I noticed while I was on biotin, was that I had a pain in my spine that went away. And, I seemed to feel a little better overall. I stopped taking it at the one year mark, because I noticed that my walking started to decline. I didn’t feel it was helping to stop my progression. As I understand it, drinking adequate water is important. I always tried to drink at least one and a half liters a day. I hope I answered your questions. The best to you, Debi
Jenny S
I have been on High Dose Biotin for 19 months and my MRI taken in October 2018 showed no progression. My walking ability is sometimes slow and sometimes faster. Sometimes I have more energy and can work doing chores around the house.
My cognitive skills have not improved but I am happy that I have not progressed. I am still SPMS.
Hopefully they will have a cure someday and if I don't progress that will be very good.