Happy spring, everyone! Hopeful news for new treatments for progressive MS recently.
First up, Biotin. A new study using this common vitamin reported reduction in disability for 21 out of 23 participants with progressive MS.
Twenty-three consecutive patients were treated with high doses of biotin ranging from 100 mg to 600 mg/day (median=300 mg/day divided in three doses) for 2 to 36 months (average of 9.2 months). Fourteen patients suffered from Primary Progressive MS and 9 from Secondary Progressive MS. Five patient had visual problems, and 18 patients had problems with disability related to spinal cord involvement. Assessment was of visual measures, walking distance, EDSS, TW25, muscle strength testing and videotaped clinical examination in a subset of patients; also fatigue, swallowing difficulties, dysarthria, Uhthoff׳s phenomenon and urinary dysfunction.
21 out of 23 participants showed evidence of improved disability, 2 to 8 months after starting treatment. This was an open study – in other words both the people with MS and their doctors knew what treatment they were receiving; which can bias the results.
Possible modes of action of Biotin were suggested to be: activating the Krebs cycle in demyelinated axons to increase energy production, and assisting in synthesisng the long chain fatty acids that are needed to produce myelin.
Conclusions, of course, are the ‘more research is needed’, and luckily, two multi-centre double-blind placebo-controlled trials are currently underway.
But to understand more how this information can be used at the current time, let’s look into:
What is Biotin?
Biotin is a form of vitamin B, present in many foods and available as a supplement under many names, including vitamin B7, vitamin H, biotina, biotine, and coenzyme R.
Biotin works by breaking down food into sugar that the body can use for energy; it’s important for healthy skin and nails, eyes, liver, and nervous system, and sold as a supplement to aid hair and nail growth, at strengths of up 10,000 micrograms.
In this study it was used in such a high dose – 100 – 600 miligrams – ( there are 1000 micrograms in 1 milligram) that it’s counted as a drug and called MD1003, rather than a nutritional supplement.
Biotin exists naturally in many foods; highest sources shown below:
Interestingly those gut bacteria pop up AGAIN! – Most bacteria in the gut synthesise Biotin, it’s possible that humans make use of the biotin they create, and for those on long term antibiotics or medication designed to manage epilepsy ( and often used for pain in MS), and, in people with neurological conditions such as MS the ability to synthesis biotin can be compromised, and lower levels of biotin than usual were found in the cerebrospinal fluid in one study. Another reason to keep those good bacteria happy!
|Food||Serving||Biotin (mcg) (32, 33)|
|Yeast||1 packet (7 grams)||1.4-14|
|Bread, whole-wheat||1 slice||0.02-6|
|Egg, cooked||1 large||13-25|
|Cheese, cheddar||1 ounce||0.4-2|
|Liver, cooked||3 ounces*||27-35|
|Pork, cooked||3 ounces*||2-4|
|Salmon, cooked||3 ounces*||4-5|
|Cauliflower, raw||1 cup||0.2-4|
|*A 3-ounce serving of meat is about the size of a deck of cards|
Of course, nobody is recommending people with MS go out and take these giant doses of Biotin themselves. However, Biotin is not known to be toxic.On the trial, there were 2 deaths, but from unrelated causes – one heart failure, and one pneumonia. Oral biotin supplementation has been well-tolerated in doses up to 200,000 mcg/day in people with hereditary disorders of biotin metabolism (1). In people without disorders of biotin metabolism, doses of up to 5,000 mcg/day for two years were not associated with adverse effects (35). However, there is one case report of life-threatening eosinophilic pleuropericardial effusion in an elderly woman who took a combination of 10,000 mcg/day of biotin and 300 mg/day of pantothenic acid for two months (36). Due to the lack of reports of adverse effects when the Dietary Reference Intakes (DRI) were established for biotin in 1998, the Institute of Medicine did not establish a tolerable upper intake level (UL)for biotin (1).
From the MS_research blog of UCL:
Please note that OTC (over-the-counter) biotin is not the same as the high-dose, ultrapure, MD1003 formulation. Representatives of the company, developing the drug, have informed me that most OTC vitamin preparations have very little bioactive biotin in them. This is why I would not recommend using OTC formulations unless they are tested and certified to have bioactive biotin in them.
And another interested party added this information:
Doing some Googling, the best guess of what MedDay mean by ‘bioactive biotin’ is d-biotin, one of 8 stereoisomers of Biotin, and the only one to be biologically active (https://books.google.co.uk/books?id=iX3Bm85KQVAC&pg=PA105)
It seems to me that the question is therefore whether a given OTC formulation contain d-biotin or other isomers too.
From further Googling, some of the OTC suppliers/manufacturers claim that their product is d-biotin:
There is a facebook group where people share information about Biotin for Progressive MS, and presumably, where they have obtained it:
The study itself is a good and interesting read:
Sedel F, et al.
High doses of biotin in chronic progressive multiple sclerosis: A pilot study.
Multiple Sclerosis and Related Disorders 2015;4:159-69.Read the full text
Cerebrospinal fluid levels of biotin in various neurological disorders.
Acta Neurol Scand. 1999 Jun;99(6):387-92.
hello miranda thanks again for an intreresting blog you give us hope !
Hi Miranda Very interested in Biotin!!! How can I get involved in a study – or find out more about it. Sounds so helpful!! Not good at present – do you think a quick burst of steroids will help?? Thanks Mel xx ( Silverstone )
check all research that’s recruiting on the MS Society website; research, then ‘get involved’ will let you know what’s open at present. Re you – leave me a message at the centre to call you and I will xx
Thankyou Linda 😉
https://www.facebook.com/groups/BiotinForProgressiveMS/?fref=nf This group on Face book is very helpful for people with PPMS. It tells you how to buy D-Biotin and how you can treat yourself. Obviously you have to be aware that this course of action could be risky but I understand Biotin is not harmful even in Megadoses. You will see from this group that the results mostly are very promising and people are not deluding themselves.
Thanks for that! I will have a look now and let people know.
Very fortunate I have been accepted on the Biotin trial @UCL London . Many thanks to all who gave me advice Bedford MS centre . Dr Thorpe my Neurologist in Peterborough and Catherine Semple ,my MS nurse in Peterborough.Lets hope I receive the Biotin and not the Placebo, though whichever i receive it will help the future treatment of MS.
ooo! Keep us informed as to how it goes please! All the very best!