I'm on the Teriflunomide extended trial

Teriflunomide tablets

My last blog I talked about the Teriflunomide drug trial and the possibility of going on the extended trial, which means you will be on the full strength pill, 14 mg, one pill a day for the next twelve months or thereabouts.

So after the usual drug trial tests I get to talk to the Neurologist about the extended trial, I was fairly sure I would go on the extended trial as soon as I heard about it, depending of course if I didn't have any nasty side effects, well I didn't so I thought I would continue on the trial.

This is a new trial as such, I have finished the first Teriflunomide trial which of course coincided with signing up to the new extended trial on the same day. I asked how the other trial participants did on the first trial and no one had, had any notable problems and if I wanted to stop taking the Teriflunomide pills it was only a case of a wash out over ten days I think it was and I could go onto any of the other MS treatment drugs.

The biggest problem I had with the first trial was remembering to take the tablet each day, nothing too major (like weeks) but I could easily forget three days worth (woops! don't tell anyone) so I thought I better find a solution so as to ensure I took the pill everyday without fail, really take it very seriously, you just can't trust an MS memory I have noted lol.

I have an Android mobile phone so I have setup Google Calendar to remind me to take the tablet, it sends the reminder to my Mobile and to my Gmail email address. I have also set up an alarm clock to remind me about one hour later just in case I forget or I was busy at the time, none of this is foolproof of course but I haven't missed taking the tablet in 3-4 days so it's working so far lol. I just need to take the pill as soon as I get the reminder no excuses :)

As you can (sort of) see the tablets are in rows for each week, they have always been like that, so that does make it a bit easier to keep track of where you're up to

I haven't felt any difference in how I feel after taking the drug so that's a bonus. Anyway this was just an update to my previous post, I will update the Teriflunomide series of posts when needed or if something changes.

Yeah I know the picture is not the best, it will do!

The box of Teriflunomide pills with spares!

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!