Columns MS in Moderation – a Column by Tamara Sellman Need to Know: High-dose Biotin Protocol Need to Know: High-dose Biotin Protocol by Tamara Sellman | January 31, 2019 Share this article: Share article via email Copy article link Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Have you tried the high dose biotin protocol?“, from April 26, 2018. What is the high-dose biotin protocol? Recent research points to the use of a vitamin supplement, biotin, to treat primary progressive multiple sclerosis (PPMS) and secondary progressive multiple sclerosis (SPMS). A recent study discussed at last fall’s European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) event in Berlin, while limited in size and focus, may spark further research into what could be an inexpensive and safe approach to halting the disabling effects of MS. What is biotin? Biotin, or vitamin B7, belongs to the group of B vitamins. It’s water-soluble, which helps to metabolize substances including fatty acids and glucose, and convert food into caloric energy. It’s considered a safe supplement, as the body doesn’t store biotin and excess biotin is excreted. The recommended daily dose is 30 micrograms (mcg) for adults and pregnant women, and 35 mcg for breastfeeding women. People who drink alcohol in excess may need to supplement their biotin levels. Don’t want to take a supplement? You can find biotin in foods such as yeast, egg yolks, broccoli, sweet potatoes, spinach, milk, bananas, nuts, grains, and liver. How might biotin help with MS? According to the findings of a recent study discussed in Neurology Advisor, high doses of biotin reversed MS-related disability in 13 percent of PPMS patients who used the protocol. This form of high-dose, pharmaceutical-grade biotin, MD1003, is manufactured under the name Qizenday by medDay Pharmaceuticals. This protocol is currently under Phase 3 investigation (with a completion date expected in September 2019) for application in progressive patients (NCT02936037). MS specialists in France are currently prescribing it to their progressive patients. Other research suggests that high doses of MD1003 — 300 mg (100 mg taken three times daily) — may assist the brain with remyelination. How does high-dose biotin work? Research suggests that these high levels of biotin may promote both remyelination and energy production in the cells of damaged nerves, which could lead to improvements in disability. Other findings show that subjects with MS using high-dose biotin reported: Reduced pain Improved energy Better vision A reduction in partial paralysis Does this mean people with MS should flock to the drugstore and buy up inexpensive supplies of biotin? High doses are at 10,000 times the recommended dose for healthy people. The U.K.’s MS Trust issued a caution in its review of the protocol: “Neurologists are warning that people should not start taking large quantities of biotin supplements which are manufactured to a lower quality than the pharmaceutical grade biotin used for this study.” Is high-dose biotin right for you? It may or may not be the right choice — only you and your MS specialist can decide whether or not to try high doses of biotin. While the supplement is considered safe, it’s not without its risks. Certain medications may interact with biotin. One side effect that may be problematic for people with MS is that high levels of biotin in the bloodstream may lead to false results on lab tests measuring for factors such as thyroid or hormone levels, vitamin D, or levels of troponin (proteins used to identify “silent” heart attacks). The latter is perhaps the most dangerous. Without having an accurate measure of troponin in your bloodstream, your healthcare providers may miss a diagnosis of a serious heart condition. If you have heart problems or they run in your family, you may need to avoid biotin. It’s best to consult your doctors before deciding whether to take this supplement. Are you considering high-dose biotin? Are you following this therapeutic course? If so, do you have advice to share? Post your replies in the comments below or at the original forum entry. *** 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. Print This Page Tags Biotin, clinical trials, ECTRIMS, remyelination Comments Harold I have R&RMS, it came to visit in 1984, and has refused to leave; I take Tizanidine for muscle control and Amantadine to help with Fatigue, the fatigue is much worse sine 2013 when I had a relaspt, brought on by the flu. I have tried vitamins and other herbs to try to overcome the many gifts that MS has brought, but none seem to have any effect, I might try biotin, never had that one. Reply Tamara Sellman Hi Harold, just a reminder to be wary of this: "One side effect that may be problematic for people with MS is that high levels of biotin in the bloodstream may lead to false results on lab tests measuring for factors such as thyroid or hormone levels, vitamin D, or levels of troponin (proteins used to identify “silent” heart attacks). The latter is perhaps the most dangerous. Without having an accurate measure of troponin in your bloodstream, your healthcare providers may miss a diagnosis of a serious heart condition." Good luck to you! Reply Helen Scott Yes it certainly distorted some of the values of regular blood tests just stopped taking it for a month and rerun of bloodsback to normal. Reply Tamara Sellman Thanks for sharing your experience, this is one of the inspirations behind writing in the article in the first place! Glad you could get a normal blood test again. Tamara Reply Zail Hi, Can you share your experience and did it help you in any form? Also I read 90% of MS patients with RRMS switch to Secondary progressive in 25 years so with your case hope you are still mobile and not secondary progressive Reply Maureen Brennan Keep that wonderful sense of humor Harold you'll do great !!!! Good Luck Reply Michelle B I also have Ehlers Danos syndrome, which causes a lack of biotin, as well. I’ve often wondered if the 2 are related, now it seems I may have my answer. Reply Tamara Sellman That's interesting, thanks for sharing! Tamara Reply Barbara Patrick Hi, I have MS, and Ehler Danlos is in our family. I would love to hear more from you. [email protected] Reply Tamara Sellman Hi Barbara I hope you don't have both MS and Ehler Danlos, that would be so unfair! Welcome to our community. Tamara Reply Marie I used biotin, liked it alot,but I had to buy it from a compound pharmacy, which set me back over $200 a month! I also was diagnosed with osteoporosis, and biotin can cause osteoporosis, or make it worse. So, needless to say, I'm not taking it anymore! Reply Tamara Sellman That seems overly expensive... in the US, it's typically inexpensive and over the counter. Keep in mind, the research points to pharmaceutical grade biotin at very high doses, not something you can (or should) do without the support of a physician, and it's not considered a proven therapy yet. I believe a phase III study is still necessary to confirm the results of high-dose biotin as a solution for disability. As for biotin causing or worsening osteoporosis, maybe share a link to research that indicates that? That's news to me. TKS Reply FB Re "...biotin can cause osteoporosis, or make it worse." That's a new one to me as well, and I looked into biotin pretty thoroughly before making my own decisions about it. A basic google search has turned up nothing at all to support any sort of biotin/ osteoporosis relationship, apart from a couple of vague references on fringe quack medico sites about bone health, and even those sites didn't make any claims that biotin contributes to or causes osteoporosis. So, as someone in the age group that's at higher risk of osteoporosis I'd also like a proper reputable research reference or two. I did find this interesting article about B Group vits generally and bone health, but Biotin/B7 isn't even mentioned. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4446754/ Potentially the most serious problem with biotin is the effect it can have on blood test results and inappropriate medical treatment than could follow from skewed results. This article is three years old but it makes it clear how serious it could be if you don't tell your treating medical practitioners that you are taking biotin. What I found interesting is that even the amount of biotin in some OTC "hair/skin/nails" supplements can affect blood test results. https://endocrinenews.endocrine.org/january-2016-thyroid-month-beware-of-biotin/ Here's another more recent report, specifically relating to a PwMS. Given how critical thyroid function at the RIGHT level is to so many functions in your body, a false thyroid blood result and inappropriate treatment is not a minor issue. https://www.neurologyadvisor.com/actrims-2018/biotin-leading-to-thyrotoxicosis-hyperthyroidism-in-multiple-sclerosis-patient/article/740885/ MedDay, the company running the biotin clinical trials, provided participants with a card to show any treating health professionals, but this isn't going to help the vast numbers of people who are taking biotin sourced from a range of suppliers who have set up to meet the demand from PwMS. My neuro want's me to keep taking biotin, but I have another non-MS health condition which can sometimes mean that I have to have bloods done at very short notice, so for the moment I have stopped taking biotin until I can find out if my local pathology lab can use a different test assay, as the 3 to 4 day "biotin abstinence" window may not always be possible for me. I also printed out, and carried with me, the information from the MedDay website on which tests biotin is known to affect. http://medday-lab.com/ (Note that the two "buttons" labelled sandwich and competitive immunoassays are links which lead to further information on how biotin affects blood test - it was gobbledegook to me but I also printed that out to go with the other information.) Reply Tamara Sellman Thanks so much for this reply! Great information and links, just shows you how complex using supplements to treat MS can be! With appreciation, Tamara Reply Helen Scott Yes you are correct it was the ‘wrong’ assay that was use in my case. Reply Fred I buy my high dose Biotin off of AMAZON. My Rx told me that they now sell it. Ive been taking 100 3x a day for three yrs. I cant say that its a miracle drug but I can tell If I miss a few doses with fatigue levels. PPMS patient for 3 yrs. Hope this helps Reply Tamara Sellman You may wish to reread the article: "Does this mean people with MS should flock to the drugstore and buy up inexpensive supplies of biotin? High doses are at 10,000 times the recommended dose for healthy people. The U.K.’s MS Trust issued a caution in its review of the protocol: “Neurologists are warning that people should not start taking large quantities of biotin supplements which are manufactured to a lower quality than the pharmaceutical grade biotin used for this study.” " Reply joseph Odell What brand did you get? Reply Carole Sachs I’m just looking at this chat panel after looking up (again) properties of taking high dose Biotin. I live in London so was getting a relative to buy it for me in the US and was taking 3x 100mg a day. Now as the clinical trials did not show the result I/we would have wished for, I have reduced my dose to 1x 100mg a day. Reply Kara I tried the biotin protocol, using a form from a very reputable supplier of this supplement. While some saw small improvements, I had increased spasticity. If approved, it will be interesting to see how the pharmaceutical industry will price this inexpensive vitamin supplement. Reply Tamara Sellman Interesting... were you part of a clinical research study? Reply Angela Please share your supplier info! My dad is bed ridden and his muscles are tight. I'd love to try this supplement if I can find it to be affordable for him. Reply Tamara Sellman As the article states, this therapy is not available at this high dosage in the US (https://clinicaltrials.gov/ct2/show/NCT02936037?term=MD1003&phase=2&rank=3), it still needs to go through a phase III study to clarify safety. Others here who are using lots of over-the-counter biotin are likely not getting the equivalent of what the researchers are using. Reply Mark Butler Pure Bulk sells it in bulk form so you could make up your own capsules. They say it is pure biotin. Reply Anita Also, Skip’s Pharmacy in Deerfield Beach, Fl. It’s a compounding Pharmacy. I think about $40 for 100 capsules of 100mg. I just started taking them about 4 days ago. Reply Aphrodite https://www.acenutritionusa.com/shop/high-potency-d-biotin-100mg-with-ala-400mg/ MY PHYSICIAN RECOMMENDED THIS PHARMACY TO COMPOUND AND IT WAS $31.00 PER BOTTLE IF YOU BOUGHT THREE Reply Norm We buy it on the internet, very reputable firm, owner is a compounding pharmacist and actually has MS, this is the link for the company http://www.metabiohealth.com good luck. Reply Glenda Kara, I am certain that not only will the price be thousands of dollars per month, but also over-the-counter (OTC) availability will shrivel. Reply Janis Sholtis With the recommendation of my neurologist, I have been taking the high dose of biotin (over the counter)for 6 months. The increase in energy is remarkable, truly the best I have felt in years. I haven't had any bad side effects and lab test results have been similar to pre-biotin levels. I am female, 72 yrs. old and discontinued Copaxone treatment for RRMS a year ago. Again with the approval of my doc and because of my age. So far, so good! Reply Tamara Sellman Thanks for sharing, Janis. That's an interesting outcome. Tamara Reply Sandra I’m using a compounded high dose Biotin for about 18 months now for my PPMS of 12 years. I live in Australia. It costs me $100 a month. I’m 56, female. My EDDS score is 6. Use a walking frame and suffer major fatigue. Haven’t noticed any major changes maybe small ones, in energy and bladder issues. It’s challenging to measure any positive effects of the vitamin. I’m not on any DMT’s just high dose Vit D. If I’m having any bloods taken I stop Biotin for at least a week before. I’ve had no adverse side affects. Reply Tamara Sellman I don't believe the high-dose biotin therapy referenced in this article is available in the US. Taking biotin supplements may be useful, but they are not the same as high-dose biotin therapy. Reply Jenny S I buy my High Dose BIOTIN from skips pharmacy which is now available on AMAZON. It is the same pure BIOTIN as in the clinical trials. 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 or grocery shopping. Occasionally I have to use a cane or arm crutches but other times I don’t need any mobility devices. 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. Reply Milan Kocic Hi, Can you tell me how much high dose of vitamin D you take (in standard units IU). Also do you have some special diet because of vit D. Please tell me more of that. Reply Cheryl Grey I have been on HD Biotin since Sept 2016. I truly believe I owe my life to it. I was falling (badly) 2 or 3 times a week, resulting in many head injuries & visits to hospital. After about 9 months from starting, I noticed the falls were lessening. After about 18 months, I was rarely falling and it was like messages were 'getting through' to put my leg or arm out to help regain my balance. Reply Ed For anyone who is interested, there is a closed Facebook group for Biotin and progressive MS. https://www.facebook.com/groups/BiotinForProgressiveMS/?ref=share Reply Tamara Sellman Thanks Ed! Reply 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 or grocery shopping. Occasionally I have to use a cane or arm crutches but other times I don't need any mobility devices. 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. Reply Bridgette B I just started a regime of Biotin 3 weeks ago. I have experienced more spasticity in the last 2 days. I hope that this means that it is working. Reply donna f. My new neurologist in NYC told me to take this & also Alpha Lipoic Acid. He said it has been shown to help with ms. I have the primary progressive kind. This dr. is great, spent 1 1/2 hrs. with us explaining everything & asking me all types of questions. The hospital where he is has a whole MS center so they're on top of everything. He thinks I've had MS for longer than I thought. I was misdiagnosed up here as having the rel. remitting kind & also was told I had lupus. This dr. thinks the symptoms of lupus were really the ms years ago starting. (I only had joint pain & ana in my blood) So glad to have been referred to this dr. & hospital. He's the first dr. to actually listen to everything, spent time with us & explained everything to us. Reply Tamara Sellman Glad you've found a healthcare provider that seems to be listening to you and is supportive. I've heard good things about ALA as well as biotin. Just a general note: As with any potential treatment, it's always best to follow your own neurologist's advice. Some MDs are more conservative than others, so if they aren't making suggestions for certain supplements, it might be due to their conservative approach. If that's the case, you still have the right to ask about alternatives and request that they look into them to see if they might help. Tamara Reply Margaret What is the dr name? Reply Dianne Would love to know the brand name and dosage of the ALA your neuro perscribed:) Reply lisa wolfe where is your doctor at.sick of these doctors around where i leave Reply Todd Berger I have to know... if 5 mcg a day helps with hair, skin and nails, if I started taking 300 mg a day, will I wake up looking like Chewbacca? If so, I'm down to give it a shot, anything to get this beard long, and help with my MS? Win win situation. Reply Tamara Sellman LOL, I'm pretty sure it just strengthens the proteins that make hair, skin and nails, but it doesn't increase your production of these. Tamara Reply Heather Woods I started taking it a few months ago for hair loss. I had no idea it would affect of my MS. I do have more energy. I come from Manitoba Canada that has the highest amount of MS in the world. I moved to a milder part of the country BC that is cooler in summer. So basically I found out about Biotin by accident. I will have to have a talk with my MS doctor. Reply Tom Anderson I'm surprised nothing has been added to all this about the phase 3 outcome. Wile 12% experienced improvement in walking speed, so did 10% of the placebo group. Reply D. I'm concerned about High dose biotin as newest studies (on rats) have shown it can cause fatty liver disease. But in a way that the blood markers don't show but it changes the morphology of the tissue. This is concerning. Study was "Dietary Biotin Supplementation Modifies Hepatic Morphology without Changes in Liver Toxicity Markers" Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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