First day of Aubagio Washout for Lemtrada Infusions

Well I arose from my slumber quite late today, went to bed at a reasonable time but just couldn't get off to sleep, quite common for me. I did "pop a pill" to help me sleep but it had little effect, some times they seem to work, other times, my racing mind over comes the drug's intended purpose. I woke with thoughts of undertaking my first day of the washout regime, oh yeah ok need to get some orange juice to mix the powder of the Questran sachets in so they're more palatable and easier to swallow, luckily the local Service Station is a Coles Express, so it's like a mini, mini supermarket that has the basics, bonus, they have orange juice! I haven't drank orange juice for about 10 years I guess, too many oranges for my liking...

Of course there isn't a lot to say as you just empty the sachets into a glass of orange juice and stir vigorously so it's mixed in well. then down it. I suspect any effects will arrive in the following days (Hope not!)... I must say after having two glasses of orange juice mixed with this Questran stuff I actually feel quite full, it didn't taste bad, it only tasted of, well, orange juice lol.

After actually reading the instructions on the Questran box... I note I may need to get a "stool softener" from my doc or chemist, great I thought it was going to be the opposite to firm stool, I thought it would be an explosive experience, I'm really not sure what's preferable!

On another note, I seem to be getting a little more apprehensive about the impending Lemtrada infusions, mainly because, I like to be informed so I've been reading and watching personal blogs and videos so I know what to expect, it's not all "candy canes and puppy dogs" it doesn't sound like much fun at all, but I'd rather know what to expect than not, even if it does fill me with a bit of fear in the process. I'm concentrating on the possible positive bonuses there are after the Lemtrada infusion treatments. Obviously there is not a great deal to say until I'm actually admitted to the Hospital and the first infusion starts.

Oh, today I deleted my Google Calendar entry that reminded me to take my Aubagio pill everyday, well it notified me twice a day so I didn't forget, I'll miss that notification everyday lol.

That's all for this post, I suspect I'll have more to say about this washout in the following days, most likely, swearing, cursing and not all that happy lol...

Aubagio Washout prior to Lemtrada Infusion

This won't be a large post, just wanted to add the picture of the washout drug I need to take before I have the Lemtrada infusion, wow there are quite a few sachet's I need to consume lol. This "washout" is to get rid of any trace of the Aubagio Oral medication from my system. I have been taking Aubagio for about three to four years from memory. I need to take two sachets twice a day after food and separate dose by two hours of other medication if possible. This should be interesting...

Picture of Washout Medication

Yep the picture is not all that clear, probably from the very slight shaking of my MS hands lol. I've also organised with the Pharmacist to save me a Fluvax as he only had two left, we're at the arse end of the Flu season I guess and he won't be getting any more this year anyway or so he said, the Fluvax and Pneumovax are injected after the washout.

Aubagio Now On The PBS and Available in Australia

I've been on the trial supplied drugs that needed to be organised by the trial nurses and neurologists, at the start the nurses supplied it all, then it went to the medication having to be picked up at the hospital pharmacy, the day included the basic neuro tests and a blood test. Now that Aubagio (Teriflunomide) is on the PBS (Pharmaceutical Benefits Scheme) it's now available at your local chemist, I had to have it ordered as my local Chemist needed to get it in for me. I found out that the Aubagio costs about $1800 a month, that's more than the older injectable Interferons, wow, it's expensive!

The Chemist guy said he will need to order it each time as he won't be carrying a drug that is that expensive, so I'll need to make sure I get it ordered before hand. There is also a New Packet for the Aubagio, yee ha, first the drugs had a great seven day plastic/paper pop out type pack so you could more easily follow the days and you knew if you had taken one or not, it was so easy, then it went to a five day foil pack, that was a total pain in the arse, I was always forgetting to take the pill and didn't want to "overdose" so to speak, now they are colour coded and days labelled, excellent to help you remember where you're up to.

Here's some pictures of the new wonderful packaging!

Aubagio Packaging

Here is a picture of the new seven day pill packaging, wonderful addition!

The Colour codes are for weeks with each day within :)

So I now have to pay for my Aubagio damn it, I pay about $6.00 for each new packet of Aubagio, we have a great public health system in Australia, which I'm much appreciative of make no doubt about that! The main thing is that I can now get it from a chemist that is about 200 metres away.

Note: *AUBAGIO is a once-daily oral therapy approved by the FDA for relapsing forms of MS.

AUBAGIO can play an important role in your treatment plan for relapsing multiple sclerosis (RMS). AUBAGIO is a disease-modifying therapy, or DMT, used to treat RMS.

More Information at the Aubagio Home page

Aubagio Home Page

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).

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!

I 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  :)

Latest Teriflunomide Oral Drug Trial visit

Last Thursday I had my most recent drug trial visit, it was one week later than scheduled, no big deal, although I do look forward to my day out as pathetic as that is lol. I asked the nurse why the appointment was pushed back a week, she said the latest batch of trial drugs had failed the heat sensor test in transit, not sure if the sensor is placed in the box or it's on the outside anyway they obviously couldn't risk giving these to patients doing the trial.

I was due to get my three month supply, so it was no use me coming in until they had the drugs, each pack of the oral pills has seven days of spares so I just used them, so in three months there are 21 days of these "spare" pills, I have never needed to use one of the spares before, but I admit I do often drop these small fiddly pills before they reach my mouth, luckily even more so these days as I live in a smaller residence which is easier to keep somewhat tidy, funnily enough, I can find things easier and always find the stray pill I drop lol.

For the first time in about three months when asked how I was feeling I answered "fine, no problems", I always answer very truthfully when doing a drug trial, I mean why wouldn't you, but if they ask the question I will answer truthfully from the perspective that I am doing a trial and they want to know everything no matter how small it is and rightly so, after all we are guinea pigs that can talk so we can give some good feedback. It's sometimes difficult to distinguish whether it's MS symptoms or just general life ups and downs, but I tell them anyway. This time though, the only issues I've had have been totally self inflicted, but that's a story for another time!

So I'm not sure if Teriflunomide is helping, but it certainly doesn't seem to be doing any harm which is a bonus. Every three months you have to fill out a questionnaire, this I despise doing, sure it's just ticking boxes and choosing from multiple choice answers, so it isn't difficult, but it's about ten pages of questions, I can't remember what I did yesterday let alone answer questions pertaining to the last three months of how I've been feeling, so I don't deliberately lie but I fear that if they compared the previous questionnaires they might think I'm taking the piss lol. Ho hum, they are dealing with MSers what else can they expect :)

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!

Teriflunomide - Oral drug trial - part 04

I'm a bit late posting this blog, I forgot, I couldn't be bothered, the dog ate it etc. etc. Anyway I will attempt to do it now, not much to tell.

Well it's been a week since I visited the trial nurse, pretty much same old same old visit, blood test, urine sample, few questions to answer and I'm outta there, except she did say that my last urine test (two weeks before this visit) was not strictly speaking normal.

Apparently it there was something foreign found by the test, there was a protein in it, I wouldn't have a clue what that exactly means but I guess "not normal" conjures up all kinds of thoughts but apparently it was not of too much concern and they will keep an eye on my urine for any future anomaly's, lucky urine! I haven't had any phone calls since my last urine test so hopefully all is well. Maybe it was that dodgy lamb chop I had eaten, who knows, I don't eat much red meat at all so anything is possible I spose.

Oh on the way back from the trial visit I wanted to pick up a fry pan, not an expensive frypan, not a fancy frypan, not a non-stick frypan, I have decided that I will never buy a non-stick frypan ever again, granted I only ever bought cheapish non-stick frypans, but I hate them yes hate them, it's an inanimate object so I choose to hate them, so I went back to my camping days, I went to a camping shop and bought the biggest deepest cast iron frypan they had.

Happy days, I can now use a frypan how they are meant to be used, I can use a metal egg flipper to generally flip things, I can use metal tongs to pick things up, I can even use a knife to cut that chop or steaks piece of fat that has made the meat distort and curl up so it lays flat and has a chance to cook as evenly as possible I can even put the whole frypan in the oven after searing some meat and let it finish cooking.

If I am going to cook something, about 5 mins before I start I turn the gas on, I let the pan warm up and it holds the heat wonderfully, yes it's bloody heavy, but that has its advantages.
Yes I can do all the things you can't bloody do with ya fancy non-stick frypans, I can use a wire brush on my new cast iron frypan if I want, hell I could use a jack hammer on it, no more having to worry about special utensils or scourers to clean non-stick frypans with!

That was Darins big day out, what a sad life I have lol.

Teriflunomide - Oral drug trial - part 03

Well I visited the guinea pig clinic on thursday, not much to tell most likely there won't ever be much to tell, but that's a good thing when you're on a trial, it's better than having to write about horrid side effects etc. So it's really quite boring, I don't think I have felt any worse and I still think I may have slightly more energy, because let me tell you when winter rolls around I pretty much hibernate and don't do much at all eg. zero energy and to cold to go out gallivanting around, let's be honest I am probably the most boring person you would ever meet.

I did find out something wonderful about the trial though, soon I will only need to visit the clinic every six weeks unless of course there are problems. Ya see I really dislike having to be somewhere, I prefer to get where I want to go at my own pace, I am the great procrastinator, so when I have to rock up to the clinic days I am usually a bit late and only sometimes early, so with visits every six weeks I have lots of time to work up to the clinic day. I am so bloody slack!

The nurse didn't have results of the blood test from the previous visit with her so I didn't find out if anything was different, but I do admit I am not that bothered, I know they will ring me if there are any problems, so that will do for now, I might push the nurse later on for info about the results, but I really don't want to start wondering whether I am on the drug or not, as I've said before I am very wary of the placebo effect, I just want to take the pills visit the clinic for my occasional "big day out" and get on with my sad pathetic life lol, I am so busy doing nothing it would blow your mind.

Off topic I did catch what I think is the last of the mice that had taken up residence in my abode after a fairly major yard/property clean up by myself and the guy next door (he is selling his house) I just couldn't be bothered mowing the lawn. I had caught quite a few mice, but one had eluded me, I guess seeing someone commit genocide on your species would make any varmint vermin think twice about going near a funny looking spring loaded object no matter how tasty it appeared to be, the peanut butter just wasn't working, it had served me very well, but I needed another more shifty way to entice him, so I sprinkled bird seed on top of the peanut butter and pressed it in so he had to work to pinch what ended up being his last meal, before being nearly decapitated by the spring loaded bone crusher!

RIP little mousey, you were a worthy foe, but alas human ingenuity had your number, you know, that number that was well and truly UP!

Happy, happy, joy, joy ;o)

 I feel like a Hot Chocolate now!

Teriflunomide - Oral drug trial - part 02

I have now been on the trial for two weeks, I went for my two weekly check up today, just a blood test and urine sample, no neurologist check up, two neuros do those standard tests that most of us would have when we visit the neurologist, eye test, walking test, the finger test to your nose, run heel down shin etc., none of that today, was in and out very quickly.

Not a lot to tell because obviously the blood test was for the two preceding weeks, so next time I visit I might be able to find out how the blood test was. I did find out why I didn't have a lung function test, the nurse said she wasn't sure, but the trial I am on doesn't require it so Deanna may be on a slightly different trial to me, that requires a lung function test, anyway I didn't with the trial I am on.

When I was there two weeks ago I asked them if they could check my vitamin d levels as I have been taking one "5000 iu" vitamin d gel caps every day so I thought it may be worth checking my levels and they were taking blood anyway, it was just an extra vial. My Vitamin D level was 131, so it's at a good level and seems to indicate that the gel caps are working to raise the levels.

How have I felt since being on the drug (or placebo)?
I have felt like I have had a little more energy since I started taking the pills, but that's about all, who knows it may all be in the mind ;o)

That's all for now, as I said it will be interesting to see what the results are next time.

Cheers

Teriflunomide - Oral drug trial

Well this is the second trial I have taken part in, I have been going through the screening process for the past few weeks, which in my case has included blood tests and a cat scan and the usual MS tests they give you, I was accepted into the trial today and was given the pills, three months worth for now. I guess my main reason for doing this trial is because it's a trial for oral medication, even though I overcame my needle phobia with the last trial, I honestly don't think I could handle giving myself injections, to me that would be a massive step in overcoming the whole needle phobia phenomena and I would probably just not take the medications if I had to inject myself. If I ever become a diabetic I will cross that bridge when I needed to (from a needle phobic point of view diabetic people have my total respect ;) ).

I will also take part in an additional optional sub-study involving pharmacogenetic testing, put very simply, it will help work out who this drug will work for and who it won't from a blood test, I guess it's similar to that Betaferon story about a test for that drug that will determine whether it will work for a particular person from a blood test. It's all about your genes!

Normally they do a ultrasound on your pancreas (to get a base reading), but they had trouble finding mine, that's why I needed to have a cat scan, the trace they inject into you for the cat scan makes you feel like you wet yourself quite trippy but not too bad at all. The trial goes for two years, Deanna's blog about this trial has more information, no use reinventing the wheel

I didn't have lung function tests like Deanna did though, don't know why and I forgot to ask today, must remember to ask next time.

Anyway I will update as the trial goes on!

Cheers ;o)