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.

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.

Tuesday, April 14, 2015

I Found an Old Email

Thank you in advance for indulging me on this off-topic post. I thought some you might enjoy it.

In the summer of 2000, Kim and I decided to quit our jobs in northern Maine and move to the more populous southern Maine coast. Kim started her new job at Cape Elizabeth Middle School in late August, but I still hadn’t found suitable employment, so I continued on as a contractor at my former employer. I worked mostly from my house, where Amy, Zach, and I still lived. Kim drove home every weekend. In mid-October I could stand it no more, and everyone agreed that the kids would move to southern Maine with Kim, and start school in Cape Elizabeth. I would commute down there on weekends.

I had been told I had possible multiple sclerosis by a physician’s assistant, but a neurologist overruled him, although he couldn't offer an alternative diagnosis. So I knew MS was in the realm of possibilities, but I doubted that I actually had it.

I often sent Kim email updates during the week, and I decided to have a little fun with this one. The note is from Friday, October 20, the kids' last day of school in Lincoln. We would move them to southern Maine on Saturday. Here it is, poor punctuation and grammar on full display.

Friday, October 20, 2000 8:15:10 AM


Here are the morning news updates:

Zach Sturgeon to Spend His Last Night at Friend’s House

In an unexpected move, the mother of one of Zach’s best friends, Lisa French, contacted Zach’s Dad about Zach going to Bangor tonight and spending the night at John French’s house. In an interview Zach’s dad said, “What the hell, it’s his last night. We can probably pack better with him gone anyway.” Statements issued from the Sturgeon house indicate that the French’s will pick up Zach at around 5:00 PM, and drop him off at about 10:00 AM. When asked about the impending move, Zach repeated an oft used phrase during this campaign, “I just can’t wait to meet all those new friends.”

In related news…

Amy Sturgeon to Have Some Girl Named Melissa Spend the Night Tonight

As a counter move to the above story, young Amy Sturgeon coerced her helpless dad into letting her have a friend over tonight. After all, it was only “fair”, she said. When asked how he expected his wife to respond Mr. Sturgeon replied, “Given Amy’s track record of making huge messes when she has friends over, on the surface this may appear to be a poor decision. However given the overwhelming emotion of a last day at school, I think this was the best thing for everyone involved, and I’m sure my lovely wife will support me on this one.”

And then this one…

Pixie to Go South – Children Rejoice

Sources close to the Sturgeon’s indicate that Mr. Sturgeon told his children this morning that the much loved family feline “Pixie” will indeed be making the trip south this weekend. The news was greeted by the children with much hub bub. When asked about the timing of the news, Mr. Sturgeon explained, “the ride to school this morning was a little emotional for everyone. Not on the surface mind you, but you could sense its presence. So, as I dropped Amy off for her last day I decided to give her a little boost to start what is bound to be a very difficult day for her.”

Sturgeon Having Difficulty Getting His Work Done

Is the world renowned former Assistant Superintendent finally washed up? Some people think so. “You can’t even get 40 hours per week in!”, said some guy that looks in the Sturgeon’s windows all day and writes down everything he does. “If he tries to charge the company for 40 hours I’ll tell them the truth, and Sturgeon will finally suffer the public humiliation that he deserves.” When interviewed, Sturgeon replied, “I’ve often sensed this person peering in my windows. I’ll turn suddenly around and only catch his shadow – but I know he’s there. I’ve been so busy with this move and everything, that I’m having a little trouble getting my work done. But if that guy continues to watch me next week he’ll see a whole different person. Hell, I may work 41 hours next week!”

Love ya,


Tuesday, April 7, 2015

Persistence and Creativity

As I’ve become more disabled, we’ve had to invent new ways to accomplish even the simplest tasks. Kim and I have developed processes for me to brush my teeth, shave, and eat various foods. We’ve also figured out ways for her to help me shower, get dressed, and get into and out of bed. The list goes on. Because my condition is not stable, we often have to tweak our processes, or throw them out completely in favor of new ones. Our secret to success? We practice persistence and cultivate creativity, and we often apply alliteration (obviously optional).

Sometimes we simply can’t come up with a good solution, and that’s when we call in the expert – my occupational therapist, Maren. Once in a while she has the magic answer, such as, “Oh, they make a gizmo for that. Let’s google it.” But more often than not we just start brainstorming, and she’s really good at that. She has a collection of materials in her car, duct tape included, which we have used to build prototype assistive devices many times. We are persistent, because most ideas are bad ones, and it sometimes takes many tries to find a good one. We are creative, because some of the best ideas sound crazy at first, but make perfect sense in the end.

Lately, due to spasticity, my feet have been falling off my foot pedals a lot, and I’ve had trouble getting them back on. Earlier today I had an idea. If I could raise my wheelchair up high enough, I could put my feet down on my bed, and then tug on my pant legs to get my feet onto the wheelchair’s foot pedals. I tried it, but it didn’t work. The bed was too high, and the blankets held too tightly to the soles of my shoes. I was disappointed, but only for a moment.

I noticed a footstool at the end of the bed. It’s there so our dog Phoebe can jump up onto the mattress. After getting the okay from Phoebe, I tried the same process with her footstool as I had with our bed. It worked! I was quite pleased with myself.

Persistence and creativity, essential tools for everyone, but especially the disabled.