We have to say Merci to those nice people at MedDay, today they are releasing the MD-1003 Phase III trial results for the 'Super-Biotin' treatment
http://multiplesclerosisnewstoday.com/2015/04/23/phase-iii-study-experimental-ms-therapy-meets-primary-endpoint-results-presented-ann-meeting/
MD1003 may have two beneficial effects: 1) increasing myelin, the fatty nerve-insulating substance that is destroyed in MS and 2) increasing energy to nerve cells so that they can communicate more effectively. Researchers previously studied the drug in what is called “a proof of concept” study. A total of 23 people with primary and secondary progressive MS received the drug in that initial trial, and 90% of subjects showed some clinical improvement over time. Results for that study appeared in the Journal of Multiple Sclerosis and Related Disorders.
News that Myelin can potentially recover is great, the loss of the 'translation matrix' between our nerves and brain results in the most bizarre and debilitating sensory and neuropathic pain. Just being able to 'feel' things or feel things normally would make a massive difference to many MSers lives. To not have constant pain and discomfort is something we aspire to and this may be a step in the right direction.
So how much do you need?
It could be a long time before it actually gets approved for patients in countries around the world, so in the interim do we all ramp up our consumption of Biotin ? In Europe Biotin is available readily in high dose form, in the UK if you're a Costco member you can get 250 x 5,000ug but you need to munch down on somewhere between 18 and 30 of them a day to get close to the volumes of biotin provided by the trial.
What does it do for us?
Biotin is sold as a supplement for Healthy shiny strong Hair and Nails and anti aging, so if nothing else happens at all, you'll have lovely nails, a long shiny coat like a spaniel and just might find a cure for baldness and like Benjamin Button we will turn back the years and look 21 again :-)
The best news is this appears to be effective for people with progressive MS, goodness knows those with progressive must be thoroughly fed up of the many treatments released in recent years which are only for those with Relapsing Remitting MS ...... how very unfair, us RRMSers get some respite, but for a person with progressive it goes on and on without end ..... cross your fingers guys and gals, perhaps not for much longer
If your Myelin can recover and that translation layer can begin to function more normally then perhaps this can offer a relief from the Neuropathic pain and sensory disturbance that Myelin depletion causes, if it can hold back the tide stop things getting worse then that's great news.
Why should we believe?
Because if we don't have hope, then what hope is there for us at all ? If we don't grab that hope at every opportunity, shout it from the rooftops, inspire and support each other and keep encouraging the likes of Med-day and others to keep trying because WE believe they can keep finding ways to beat back, stop or kill the MonSter.
After all if we don't believe why should they ?
Tracy - I'm two months post Lemtrada and planning to start high doses of Biotin. Do you know if there are any health concerns considering the changes in the immune system from the Lemtrada, or anything else?
ReplyDeleteThere's a very large group on facebook of people taking Biotin in high amounts. The results seem to vary, but there's not a lot of discussion of people taking it post treatment. I buy tablet form and take about 20,000UI daily of them, so far no problems - but that's my personal experience as a Telco Project Manager, not the advice of anyone in any way related to the medical profession xx
ReplyDeleteHi Guys,
ReplyDeleteI take only a little Biotin every day but from reading the research about it, they stress that in the tests they did they used pharmaceutical prepared Biotin. The fear with people taking high doses of tablet supplements is that you could end up causing yourself more harm because of the impurities, if that makes sense?
Andy x
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ReplyDeleteAndy I'm firmly on the fence with biotin, I don't use pharmaceutical grate powder I buy a big bottle from Costco and take 3 a day which is nowhere near the quantities that are allegedly in use as part of the MD1003 trials.
ReplyDeleteI do have to say my hair and nails these days are lovely (think Afghan Hound) and in combination with the rest of my vitamin and mineral cocktail that I take each day life is very very good. I wouldn't stop any of it - just in case :-)
I have seen mixed reports on the Biotin Facebook group where people are trying to do their own MD1003 trial with Pharma grade biotin and some people have reported results not being as they'd hoped and had to stop taking it. I think I'll wait until it's all done and approved thanks :-)