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Friday, 1 February 2013

Teriflunomide trial comes to an end

I've been on this Teriflunomide trial for about two years from memory, although trial visit days did vary, mostly a visit each month was what it settled down to. It was my big day out each month, I used to get cab charges for the each way trip there and back, with my laziness and fatigue issues easy travel was necessary for me as I would probably have never turned up lol.

The trial has been enjoyable in that the nurses, specialists and various other staff were all professional, yet could have a laugh with you, all wonderful people. I had numerous scans a nuclear medicine test for kidney function it has been quite a ride, luckily not a traumatic one. I walked the length and breadth of the Austin Hospital with the occasional shuttle ride, some days all my energy was spent.

Teriflunomide or Aubagio as it now seems to be called, has been approved in Australia for the treatment of Multiple Sclerosis though the next step is to have it listed on the "Pharmaceutical Benefits Scheme" or the "PBS" as it's known, this scheme effectively subsidises the price of drugs for all Australians. As an example, say the monthly cost of Betaferon was one thousand dollars, well we would get the prescription filled for say $25 in total, check those figures but it is a great scheme which makes medications and drugs affordable for everyone in society.

Below is an image taken with my New Nexus 4 smart phone (shameless plug for great new mobile phone).

Teriflunomides New Packaging
There are some pics of the old packaging they used in the trial (previous post), the old packages were heaps better, in that they were in rows so you could quickly tell what day you were up to.

The new packages are quite plain and as you can see in the image come in individual foil packs of five, ffs, could made them at least seven in a foil pack, would have been much easier to keep track of what day you were up to.

Hey I have Multiple Sclerosis and have a fairly shitty memory, don't make it any harder for me lol. I might look at those granny pill boxes that are marked by day so much easier to keep track of where you're up to.

I will still be supplied these drugs until they get approved on the PBS, I'm not sure what happens if they don't get on the PBS lol, should be interesting if that happens, so I will visit the drug trial nurses and see the neuro every three months oh and pick up a new supply of the drugs for the next 3 months.

You can see a picture of the actual pill, it's a tiny thing, it's the top image, it's a bluish colour and has five sides, in the picture you will see that the pill is between standard lie heights on a writing pad, it's not a great size for clumsy MSers hands, although it is very easy to swallow because of said size.

As far as side effects go, I have found Teriflunomide to be quite good with little or no noticeable effects, with MS obviously you are always having good and bad days so it's difficult to distinguish what is just life with MS or a side effect of a drug, having said that I think I did notice when I went from the placebo pill to the real deal at 14 mg, I just felt different.

I also got some samples of Modafinil to see if they help with my fatigue and cognitive/memory issues that I enjoy lol, I'll post another blog about that though, don't want to bore you :)

I'd like to especially thank Elise, she was my main contact for the trial, she would do the monthly tests, bloods, temp, urine, etc. I'd also like to thank Bassam my regular taxi driver, always helpful and fair!

Pill BoxI have mentioned in my comment below about a pill box so I can keep track of my daily medication, here is an image I snapped of the pill box I purchased, the link to the shop is in the comment below, you will need to copy and paste it into your browser. Click to enlarge if you would like to have a more detailed view. A pill box for my daily medication has been invaluable, at the moment I am using it for one 5000iu Vitamin D capsule and one teriflunomide/aubagio pill each day, combine with google calendar reminders and you have a great system that remind's you to take your medication  :)