Tuesday, April 28, 2015

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.


17 comments:

  1. Thanks for updating. I'm doing the same - going to pharmacy grade and compounding ASAP. I hope this helps you!

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  2. I am so relieved. We don't like to tell each other what to do but you were savvy and of course, you are always looking for new information all the time, so when you found it you acted on it. Good for you!

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    1. Daphne, you can speak your mind with me any time!

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  3. Can you fill us in on the difference for pharmaceutical grade biotin vs that in a supplement?

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    1. I think the Wheelchair Kamikaze said it best:

      "First, the compound used in the MedDay trial is a highly concentrated and purified pharmaceutical grade form of Biotin called D-Biotin, a stereoisomer of Biotin that is extremely bioavailable (easily absorbed by the body) and contains active enzymes (click here). This type of Biotin is generally not available in over-the-counter capsules. Second, over-the-counter nutraceuticals are completely unregulated, and it’s almost impossible to know the purity of the compounds contained within the capsules or what other ingredients might also be present. One study found that a shocking one third of herbal supplements tested contained not a trace of primary ingredient the listed on the bottle (click here)! Additionally, some Biotin supplements contain calcium, which if taken in greater amounts can cause hypercalcemia, a potentially very serious medical condition (click here).

      After consulting with a naturopathic physician, I'm looking into procuring ultra high grade, USP certified (click here) D-Biotin from a reputable wholesaler and having it put into properly dosed capsules through a compounding pharmacy (I'm doing this with my naturopath's help, of course, and will need a prescription in order to get the drug). While this approach is likely to be much more expensive than using over-the-counter product (probably about $300-$400/month), it will offer the best chance at replicating MedDay’s trials, and would certainly eliminate the vast uncertainties involved in consuming huge quantities of over-the-counter nutraceutical supplements. "

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    2. Can u send me the info on the pharmacy you buy from thx

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    3. email me at email@enjoyingtheride.com

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  4. So far, zero luck in Boston area looking for compounding pharmacies that will even do this. Your pharmacy interested in mail order clients? :)

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    1. I'll find out. If not, were only an hour and a half drive from Boston.

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    2. I just got my first prescription of Biotin from a compounding pharmacy. I hope I experience relief. I have heard that it is very helpful for patients with Multiple Sclerosis. Also, they ship if anyine is having difficult time finding a reputable pharmacy. His price is $58. For a month supply. .

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  5. Thank you! I'd make the drive. (Passenger seat of course, Totally miss driving. I was good.) Really like your blog and your attitude. I try. Thanks again.

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  6. I understand the lack of confidence in the unregulated supplements market. That notwithstanding I've begun (51 days) my biotin trial using Natures Bounty d-biotin (10 mg 20 x per day with sunflower seeds). This is calcium free, doesn't require a doctor or a compounding pharmacy, and is costing me about $60 per month. So far so good. I am on the cusp between SPMS and RRMS and am trying to be proactive.

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  7. Mark Drugs 1-630-529-3400
    Biotin 300 mg tabs
    $95.00 for 30 tabs.
    Will ship to several states.
    I live in NJ. Having it shipped to friends in FLA and then shipped here.
    Spoke to Joey

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  8. Hello all, I have been working with UCSF doctors here in San Francisco with her MS patients and our compounding pharmacy has been doing the biotin 100mg capsules with good results.

    If anyone is in California, we are happy to compound the biotin 100mg caps. Pricing is pretty reasonable at $185 #90 capsules (1month) with free shipping. Feel Good Compounders pharmacy in Pacifica, CA. 650-898-8221.

    I hope to see more compounding pharmacies offering better pricing in the future. Biotin is very expensive and every pharmacy gets it for different prices.

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  9. Hello - for the folks commenting about the 300 mg caps and the Compounders pharmacy in CA, is this pharmaceutical grade D-biotin? There is a huge difference and clearly detailed in an earlier post reply quoting the Wheelchair Kamikaze. Thanks!

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    1. Yes, we use a pure Biotin, USP grade powder. This is the highest grade and purest form of Biotin available. Honestly, any pharmacy that compounds properly is supposed to use the highest grade ingredient when available. (per USP 795 Pharmacy Law).

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