Update on My New Treatment – Biotin

I don’t need to be made whole. I can live a happy life the way I am. I must slow down or stop the progression of this disease, however, before I become miserable. I don’t know how far away Misery is, but I know he's getting closer every day.

I wouldn’t say I’m hopeful. I would say I’m desperate.

Okay, I am a tiny bit hopeful.

Things are moving quickly on the biotin front. Here are some bullet points about what has happened since I posted last Monday.

• MedDay, the French pharmaceutical company who ran the pilot study that was so promising, reported results from a phase III trial on Friday at the American Academy of Neurology annual meeting. These results are not nearly as encouraging as the pilot study, yet did satisfy one of their desired endpoints – reducing the progression of disability in the treatment group versus the placebo group. Also, 12.6% of treated patients showed an improvement in EDSS, a common measurement of MS disability. It is difficult to assess disease progression in a nine or twelve month period, which is what they tried to do. Long-term results may be worse, or they may be better. Click here for a report.
• Today, MedDay hosted a webinar (click here to view webinar) where they went into more detail about the results of their phase III trial. Nothing earth shattering. There was a question-and-answer period at the end, and I asked what advice they would give people who are sourcing their own biotin because they can’t wait another year or two for FDA approvals. The presenter admitted that he didn't know what he would do if he were in our shoes – which I thought was a nice touch. But of course, his official position was that we should wait for their product to come to the market. I read between the lines, however. Based on his comments, I’m now more confident that compounding pharmacy grade capsules will be very close to the product used in this trial.
• A new Facebook group formed – Biotin for Progressive MS. For the past week progressive MS patients, myself included, have been talking about all issues related to biotin and MS. Click here for the Facebook group.
• As I wrote in my previous blog post, I purchased a month’s worth of over-the-counter, 10 mg biotin capsules. I began taking 30 pills per day on Thursday. I stopped on Monday for two reasons. First, it gave me the runs, and diarrhea is not fun for someone in a wheelchair. Second, I became convinced that this was the wrong approach. Over-the-counter supplements in the United States are not regulated, so consumers don’t know the exact concentration of biotin or what other ingredients are used for fillers. I decided that if I was going to do this, I would do it the right way. I want to thank a few people for straightening me out: those who commented on my blog post last week, the folks on the biotin for MS Facebook page, and other people like Marc Stecker at Wheelchair Kamikaze. Click here for his post on biotin and stem cells.
• I visited a local compounding pharmacy today, the same one that gave me a price of $440 per month last week. They worked with me and we were able to get the cost down to $275 per month. That’s still an outrageous amount of money, but it’s about 40% less outrageous than it used to be. They can cut the price even more if I place bigger orders. I will play that by ear. I placed my first order for a month’s worth of 100 mg tablets, three per day, and it should be ready in a few days.

Last week's post on biotin has been pretty much rendered obsolete. I will not be surprised if this post meets that same fate in the near future. This situation is fluid.