Biotin Oh Boy!

In this episode, Michelle buys a small packet of white powder and some tiny scales…

In my December appointment with my neurologist there wasn’t much good news. The one thing he suggested I might want to look into, though, was a clinical trial using pharmaceutical grade Biotin, 300mg a day. HERE is the data from the clinical trial – it showed some promise for people with progressive forms of MS. The news of the trial created a lot of excitement when it first came out, and we are all waiting to see where it goes next – but in the meanwhile, prepared to act on our own.

Biotin is Vitamin B7. It’s sold OTC (Over The Counter) and many people take it as a supplement for stronger hair and nails, among other things. However, the OTC stuff is sold in mcg – micrograms – and you’d have to take 30 or more of these tablets a day to get to 300 milligrams! And that brings with it a whole load of filler, the stuff that’s used to fill out tablets – junk, basically.

I started to search for Pure Biotin, and a fellow person with MS directed me towards a Facebook group of like-minded people. These people were way ahead of me and had found a couple of sources of pure Biotin powder.

I jumped in! I ordered a little packet of white powder, a set of scales and some empty capsules from Oregon. Sure. No problem… I expected it to be delivered by the RCMP, so I was a little disappointed when it just showed up in the mailbox.

Next – how to get this little bit of powder weighed out and into these capsules. Some people just weigh it out, sprinkle it on their food or just swallow it. With my ham fisted MS hands, that’s not going to be the best option, three times a day. We experimented. We got grumpy. I realised what the people on the Facebook meant when they were saying that the last shipment they had received seems to be ‘clumpy’, because it stuck to everything.

In the end we had our system. We clipped the nib off the spout of a squeezee bottle to use as a funnel. Ian used the tip of of knife to try to get the Biotin on to the scales. I put the capsules in the capsule machine and tried to fill them with the funnel. And we had a lot of white stuff all over the place. I’m sure people who handle drugs for more nefarious reasons don’t spill their ‘product’ all over the place like this.

We made 24 capsules! Woo hoo… I’m ready to start tomorrow! Don’t hold your breath waiting to hear how effective the Biotin has been, though. It seems the earliest people notice a difference is two months and for some people it’s been up to 8 months, if they notice at all. That’s 3 capsules a day – over 700 capsules just to see if it works! Biotin, oh boy…


New Year, A New Hope

In December I created a photoblog of my trip to my neurologist. I haven’t followed that with a post explaining what happened in my appointment because it’s taken me some time to process it – and I think I’m ready to share.
The end of the year signalled the end of taking Aubagio for me, and also the end of DMDs for me. Aubagio is a Disease Modifying Drug – a DMD – and these are the drugs that try to stop relapses from happening. Unfortunately, I had a whole host of side effects from it and my MS got a whole lot worse. The only thing to be done was to stop Aubagio- and that was the last DMD left for me to try. Thankfully stopping the drug has made me feel somewhat better as most of the side effects have gone now, but for a time it was a scary precursor of things possibly to come.

Here’s the deal. I have both types of MS – the relapsing type and the progressing type – something that happens to around 5% of people with MS. The DMDs I have taken over the last 7 years seem to have done their job at keeping the relapses at bay, but now there’s no more DMDs for me. I have tried them all, and, for one reason or another, had to stop them all. Now I have no protection for that part of my MS, which brings the concern that the relapses could return unchecked. And for the other part? Currently there is no treatment for progressive MS. So as it stands today, I’m not taking any medication or treatment for either type of my MS. You can probably see why it’s taken me some time to process it. It’s all a bit depressing, it’s all a bit scary.

I also got approved for CSIL in December, which is the program that provides funds for independent living – in simple terms, gives me the money to employ some home support. But that means I have to face up to the fact that I need help – and Ian deserves a break from looking after me while knowing that I’m safe. Nothing makes you face up to it all like having to write in a job description that you need help dressing, and transferring off the loo, and having a shower. It’s all a bit depressing, it’s all a bit scary.

Which brings me to the New Year, New Hope thing! Here’s my spin on it all.

My neurologist is very hopeful about a drug called Ocrelizumab, which has shown promise for treating both relapsing and progressive MS. It completed clinical trials in 2015. It will be available generally in about a year by the time it passes all of the Health Canada steps. However, my neurologist thinks that I am a candidate to receive it this year on compassionate grounds, depending on the drug company’s criteria for compassionate grounds. That was tough to hear – perhaps the toughest thing so far – that my need for this treatment is so great that I need to get it in advance of it being generally available. I choose to focus on the hope for this new treatment, whenever I receive it.

I’ve set myself up as an employer – there are a lot of pieces to it, but it’s exciting! I’ve done the tax set up, business registration, payroll, bought stationary (yippee!!!) and a filing cabinet – and yes, I’ve put an ad out and I’m about to interview, and I’m excited about that! I have a list of jobs I want to get done around the house, and I need someone to help me with it! And the personal stuff? I’ll suck it up, buttercup!

2016 has such promise on a number of fronts. Sure, doors have closed over the last 7 years, but unexpected doors keep opening. I’m excited by the advocacy and the volunteer things I’m involved in, and the change that they are able to make in people’s lives. And I’m hugely excited by the year ahead in our Winnebago – hitting the road with the dogs! We (okay I) have so many plans for places to go – or in my case, places to sleep…

And the MS challenges? I will face those as they come. The force is strong with this one 😉