Monday, April 20, 2015

I’m Starting a New Treatment – Biotin

For the last year I’ve not even attempted to treat my primary progressive multiple sclerosis (PPMS). I had no ideas. I have one now.

A couple of months ago, I learned of a pilot study with high doses of a drug called Biotin, also known as vitamin H. Twenty-three secondary progressive and primary progressive MS patients were given up to 600 mg per day of Biotin. 92% of them showed clinical improvement.

I shared the article with my neurologist. I told him I wanted to try this drug immediately, rather than wait for all the trials to be completed and permits to be granted. I don't have that luxury. He agreed to help me. Biotin is available as an over-the-counter supplement sold in tablet sizes up to 10 mg. But I wanted to take three, 100 mg doses per day. My neurologist located a compounding pharmacy that could custom manufacture the 100 mg tablets for me. I was most pleased.

Then I received a call from the pharmacy, and they told me that my cost would be $440 per month, and there would be no insurance coverage, because this is technically an over-the-counter drug. I was most displeased.

I went to the internet and found that I could get a 120 count bottle of 10 mg tablets for $8.83 per bottle at Walmart.com. I would have to take ten pills, three times per day, which is an inconvenience. However, my monthly cost would be about $90, instead of $440 – well worth the trouble. I checked back with my neurologist, and he didn’t see any problem. So, today I placed an order to Walmart for ten bottles of biotin, a one month’s supply, and I can’t wait to start. The shipment is due Wednesday.

If this drug eventually gets FDA approval for PPMS, and becomes available as a prescription, and I find that it works for me, I would get that product through my insurance and only have to take three pills a day instead of thirty.

With slow, progressive diseases like mine, it can take up to a year to determine if a new treatment helps or not, so I will need to be patient.

Later today, after I ordered the pills, I learned that a placebo controlled, phase III trial of the same drug, this time employing 154 progressive MS patients, also met with success. The details will be presented next week at the American Academy of Neurology’s annual meeting. Articles can be found here and here.

I have to be realistic. No drug has ever worked for PPMS. This one probably won’t either. But there is a chance, and acting on that possibility feels good. Wish me luck.

How ironic would it be if an over-the-counter drug I obtain from Walmart works for primary progressive multiple sclerosis, not some $6000 per month designer drug with horrible side effects and the occasional fatality? update: the over-the-counter version, at 30 pills per day, caused gastrointestinal problems after only a few days. I'm now using the compounding pharmacy version. See my updated blog post


Note: Thanks to Alex at the Facebook page Primary Progressive Multiple Sclerosis – PPMS and Stu at MS Views and News for links to the Biotin articles. Thanks also to my friend Al who found me a full copy of the pilot trial report.

26 comments:

  1. http://m.slashdot.org/story/213119
    Mitch, I hate to be a downer but, I too am constantly searching for new trials, etc... And came across this info awhile ago. I take calcium with via D daily d/t a deficiency. Buying the supplement over the counter was cheaper than getting it by prescription. My via D levels showed only a slight improvement after 6mths.... I bought the Walmart brand supplement... And after reading this article.. I questioned my decision.

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    1. Kim, you make a good point. Thanks.

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    2. Kim, I agree with you. For something this important I need to go with pharmaceutical grade, not over-the-counter.

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  2. http://m.slashdot.org/story/213119
    Sorry,, this is the link I wanted u to read.. I hope u can just click on it and it will open.. I am trying to be computer literate... But it's not working...

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  3. Exciting news. Good luck!!!!

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  4. I am doing the same thing. Best of luck to you. We are taking some risks and will need to look at the safety data. I'm using the Natrol brand, which is slightly more expensive. I hope more science and health reporters cover the biotin trial presentation at the AAN meeting on Friday.

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    1. yes, I am very much looking forward to that presentation. Good luck with your experiment.

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  5. I've not heard of Vit H before! You might try some of the compounding pharmacies that are compounding LDN for so many of us and see what they would charge. I use Skip's Pharmacy in Boca Raton, FL. Skip is definitely a user-friendly guy to MSers.
    As far as Vit D is concerned I take 10,000 IU of D3 every day and it barely gets my D3 level where it needs to be. I tried 5,000 for a year and that wasn't enough. It has to be D3, by the way. I take a lot of supplements upon advice of my integrative care doc and I try to get a good brand as there is a difference.

    Mitch, I am excited for you. I hope you'll be giving us updates.

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  6. Sounds like a plan. Keep us informed and good luck!

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    1. Muffie, I will definitely keep you informed!

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  7. I believe from my reading that it is a different form of biotin than what is in the study. However, I started taking the same biotin you ordered. I want out of this wheelchair pretty badly!

    Biotin makes the gut work faster. If you start with that dose right away,you might find you are living in the bathroom! Start with 1-2 a day for a couple of weeks, then add one more, wait a week and add another. Build up slowly.

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    1. kit, tell me more about your reading that this is a different form of biotin than what was in the study. As for ramping up slowly – I'm a couple of days into it, full dosage, with no problems so far. Crossing my fingers…

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    2. Kit, I've come to agree with you on both your points. See my updated blog post.

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  8. Hi there! My SPMSer is giving biotin a try too. In case you all are interested, we set up a FB group https://www.facebook.com/groups/BiotinForProgressiveMS/ to discuss the use of Biotin in MS. Like you, we don't have the luxury of waiting to find out if it works or not.

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    1. thanks so much for setting up the Facebook group!

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    2. I'll definitely be following this fb page, too.
      And keeping my fingers crossed that you will see much hoped for improvements and "healing" if that is possible Mitch.

      Dee/OH

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  9. I'm so sorry if I offended anyone with my comment re prescription vs otc supplements. I am always on the lookout for a "new" treatment or study that will help and I'm always up to try just about anything that might work! Unfortunately, I have yet to find it and it makes this eternal optimist turn pessimistic. I am very impatient right now and I look forward to hearing how you are making out Mitch!!!

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    1. Kim, you certainly didn't offend me. Your point merits serious consideration.

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  10. This is very exciting!

    I was dx NMO by one neuro and PPMS by another back in Oct, 2008. Been wheelchair-bound for 2 years and using a hoyer lift for toileting transfers for 9 months. I don't know if this seems like fast progression to you? My most recent frustration is with my hands curling up and losing almost all use of them.

    $90 a month to take something orally (even up to 30 capsules a day), sounds very doable to me!

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    1. yes, your progression sounds very fast to me! You are at a similar level of disability as me, but I started in 2001.

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  11. Yes, the biotin research is very exciting - finally something that might work - and it's harmless and cheap!. Just fyi, I'm getting my wife's biotin from Puritan Pride. They have biotin on sale, 10,000 mcg bottles of 50, 2 for about $5.00 with free shipping. Puritan pride seems to have a good reputation.
    Also, the latest news from the Tisch MSC trial is even more exciting, but I think this is going to be a longer process before it's available.

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    1. yes, exciting stuff. If you read my more recent post you'll see that I've changed my mind and I'm using a compounding pharmacy. Who knows the right answer?

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  12. I think it is a must to use the purist of medications. I take a 4/amino pyridine compound, the only option to date for my primary progressive MS. It keeps me somewhat mobile. Check out Dr. Terry Wahl's diet, it also helps. I also take Biotin because I was losing hair and decided it was worth a try. I 1st used Whole Body Research brand and had almost immediate results with 5,000 mcg daily. When they were back ordered, I went to Whole Foods and found the same 5,000 mcg( single ingredient ), but I didn't have the same results. I finally got more of the original Whole Body Research Biotin and again had quick results. The difference: this Biotin has no fillers, but lots of B-vitamins, Kelp, Palmetto powder, non-GMO, Gluten-free and more. I wonder if your body better absorbs with the additional ingredients. Hopefully, something positive is on the horizon for all of us!

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    1. thanks for the information. Yes, hopefully something positive is on the horizon!

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