Lemtrada - Alemtuzumab Second Course of Infusions

I did my monthly Lemtrada blood and urine test yesterday and I just got the text to advise me
"all is well", this was my tenth month of blood monitoring since my first set of infusions, from memory I've had two "please check with your Neuro" texts, they ended up being some blood in my urine...so nothing serious and no further action taken. I must admit though that getting the "all clear" text does make me feel a little happier each month lol.

Even though the second course of infusions won't happen for about another two months, I am thinking about the risks and possible issues that can occur, no doubt this will be on my mind until the second set of infusions are finished. Luckily the second set is only three days as opposed to five days with the first set of infusions. I guess that also means I will have steroids for the three days as well, the steroids do seem to lessen the infusion side effects although sleep patterns aren't the most restful when on the roids.

I'll be staying at the medi-hotel at the Austin Hospital, each morning it's just a short walk to the infusion room and then eight hours of boredom while Alemtuzumab and various other chemicals are pumped into my vein, yes eight hours of extreme boredom, it's probably the thing I despise most, the boredom! Hopefully, because it's only three days of infusions, the cannula can stay in for the full three days without a change, if I'm lucky...yes I like everything to go smoothly lol.

The one good thing is that at least it's not a new experience like it was last year, I at least know how it all works and what happens with this procedure, so that's a bonus. I must say that the first set of infusions went very smoothly, I had a million questions for the poor nurse who was organising it all for me, so the questions should lessen a little. I still don't know the exact date that this second set of Lemtrada infusions will take place, but it should be around the end of October.

I won't be as nervous as I was the first time, but things can and do go wrong, so I'll read through all the possible issues again and be as prepared as I can be for whatever eventuates ;)

Lemtrada Second Infusions Two Week Update

Ok I'm a couple of days shy of two weeks, let's continue, the second course of Lemtrada Infusions went well, with no noticeable reactions or side effects, I'm thankful..., still it's early days after the infusions. Some of the side effects can show up months later.

I've been taking it easy and taking my pre-meds, post-meds that I need to take, I'm down to one a day until the end of the month

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  :)

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)