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Tuesday, 21 February 2012

Teriflunomide Oral MS pill trial - extended

So this week the Teriflunomide oral MS pill trial officially comes to an end for me, apparently when I visit the place where they do the trial (Austin Hospital - Melbourne Brain Centre) I will be asked if I would like to continue on the "extended trial" I have pretty much made up my mind that I will continue, of course I need to annoy the Neurologist with many questions before I sign on the dotted line, it's the game we play!

I have been on the trial for quite a while now, I officially started 2010-Jun-04 I jumped at the chance to be on an oral drug trial as I didn't want to go on the injection MS treatments, I was an extreme needle phobic, not so much these days though, doing drug trials was a good way to get more used to the blood tests and the MRI scans with dye etc.

On the extended trial I will definitely be on the "real drug" at the highest dosage, from my very poor memory I think it's 14 mg, I'm either right or people are shocked right about now because that don't seem right lol. The trial was placebo, 8mg and 14mg I think, it was something like that anyway, I didn't notice any change at all so I am guessing I was on placebo, time will tell, that info will be revealed at some stage in the future, no doubt.

Mostly I received positive comments from people I know, "good on you", "that's great", "be a part of the solution" etc. the least amount of support I received was from family, my eldest brother said "I reckon you're a dickhead" for doing a drug trial, my mother, well she did her best, after I told her it would be great if you rang me occasionally to see how I'm going eg. I'm not dead etc. I rarely hear from my middle brother, it's not as bad as you may think, I went and did my own thing before MS hit, was on the move working in remote locations, I'm used to being a loner, so I hold no grudges, I just hope they are there for me if I really need them, one can only hope lol.

Going to the drug trial about once a month to every six weeks is like my day out, I get to see the outside world and frankly it sucks lol, now if I could be on my Motorcycle and didn't have MS, I wouldn't be here writing a blog, about my now shit, existence, I digress.

So this coming Thursday I will be at the Melbourne Brain Centre for a whole day of prodding and probing, first up will be an Ultrasound on the Pancreas and then I will visit not one but two Neurologists and go through their tests, finger to nose, run heel along shins, walk a bit blah blah blah, wish they'd mix it up a bit, they could give us difficult tasks to complete, video it and put it on YouTube, fun could be had by all :)

I just hope when I'm definitely on the "real drug" I don't get any weird side effects, that obviously wouldn't show up if I was on the placebo as I suspect. I don't have a lot to say right now but will post again after Thursday with more of the technical type info about the "extended Teriflunomide trial", might also even edit this post to update any facts that I got wrong. :)

Oh if you happen to have any questions that I should ask, feel free to comment, on G+ or this blog, but be quick!


  1. Darin how did you go on Thursday, did you get onto the extended trial?

  2. Yes I did Belinda I have done a follow up blog now lol, sorry :)


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