Monday, April 20, 2015
I’m Starting a New Treatment – Biotin
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.