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.

Lemtrada Infusions for Multiple Sclerosis

I'm no doubt "jumping the gun" a little, but as I did with my Teriflunomide (Aubagio) drug trial posts, I'll start blogging my Lemtrada infusion experiences and the whole lead up to the actual infusion. The discussions I had with my Neurologist and the lovely Belinda, one of the great nurses in the Austin Hospital NCRESS team were quite informative and of course I had heaps of questions as well, as I always do. Lemtrada (alemtuzumab) is a newish drug used for the treatment of Relapsing Remitting Multiple Sclerosis (RRMS), like most drugs these days it's also used for other disease treatments. I'll start with a bit of information about Lemtrada first off.




Genzyme's - Lemtrada Home Page
Lemtrada main home page

Alemtuzumab on Wikipedia
Alemtuzumab Page on Wikipedia

Lemtrada Efficacy
New study supports the long-term efficacy of Lemtrada

The first Lemtrada Personal Blog I found

USA Lemtrada Blog

It's interesting to note from the link above on efficacy

"By following up these patients over time, the authors reported that 60% of patients receiving Lemtrada showed an overall stabilisation of their illness following treatment. This included 49% of patients who showed overall reductions in disability levels compared to their baseline level. An additional 10% of patients had their illness stabilised and showed no further change in disability levels after treatment. In general, higher relapse rates at the beginning of the study were associated with poorer long-term disability outcomes."

When you read about the side effects of Lemtrada on face value you  might think "no way would I agree to have this drug administered to me" but I'm the youngest in my family, I am single and live alone, so I really need to think about the future if my MS progresses, I don't have any family close by and as I don't live with anyone else, it's best I give myself the best chance at independence for as long as I can, something I've already somewhat lost to Multiple Sclerosis, I can still walk albeit with a slight limp, I can still look after myself, I don't want that to change in  the future, so I'm going to take the risk...and it is indeed a risk, but eh, so is crossing the road. Ninety nine percent of the MS medications have a possibility of some nasty side effects lol, so I'm happy to see how Lemtrada performs for me!

The early happenings in the lead up to the infusion
Flu Vaccine
Pneumococcal vaccine

The vaccine injections will take place after the Aubagio "washout", which is meant to be just so wonderful, it should be quite the shitty experience apparently...

There will be drugs that you have to take as well on top of the actual infusion drug, which I'll add later, because well I'm not exactly sure what they are right now lol.

I have to watch what I eat, I need to be careful of contracting Listeria, damn I'm going to have to wash my hands more regularly lol,..there are quite a few things I will need to be careful with, they gave me quite a bit of literature on Lemtrada and the side effects and what you need to be careful with.

I posted this in the first Lemtrada post but will do so here as well

LEMTRADA can cause serious side effects including autoimmune conditions and serious infections.

• Thyroid disorders
• A condition called Immune Thrombocytopenic Purpura [ITP]
• Certain types of kidney diseases

I'll publish this now, I'll no doubt add a little more to this post, but it's late and I should be in bed...

Lemtrada Information Video

Image taken from a Lemtrada information pdf from the Australian MS Society

Lesion activity

I had my regular yearly Neurologist visit today, it was also a follow up to the recent MRI scan I did a couple of weeks ago, (or was it one week ago, eh, who cares), I've only been back home for a couple of hours. I was going to go through the visit to the Neuro step by step in order of events, but damn I've forgotten already lol.

Basically I recall sitting down going through the pleasantries that us humans go through, I've known my main Neurologist for about 6-7 years I guess, I did an "Interleukin" drug trial that lasted about two years. I also did the Teriflunomide (Aubagio) oral drug trial that lasted wow, so bloody long, three to four years all up from memory. So I guess we know each other rather well from a patient - Doctor (Neurologist) relationship as he was the main man in charge of those trials, of course with the system we have in Australia you get to talk to most of the available MS Neurologists at the hospital over time. Though you generally have a "main" neurologist. I have respect for Richard (Neurologist) he always answers my incessant questions about all things MS.

After the quick chat we got down to business about me and my MS (one of the few times these days I feel anything at all is actually all about me lol), we started with the most recent MRI scan, the Neuro pointed out that I had a new lesion. A lesion that appeared not to cause anything noticeable, I actually thought my MS symptoms had kind of plateaued, it's difficult to be a practiser of logic rather than emotion when you have MS, you have the pseudobullbar effect attacking you from all sides virtually with every thought you have, it can induce sadness or hilarity, it can reduce you to tears over the simplest negatives you come across or you can find yourself giggling at the most inappropriate things to giggle at, like a person who has a warped sense of humour often does.

So what does a new lesion actually mean to me in my case, one that doesn't seem to be affecting me with an obvious new symptom or an old symptom returning with a vengeance. It means that the drug I am currently taking, Aubagio, the oral drug I was part of the trial for, is no longer effective at doing what it's meant to do. Well now, that really is a bugger, isn't it, it means I need to look at something else to keep my Multiple Sclerosis at bay. The Neuro seemed to suggest the best way would be to go at it hard, in that, not just go to say Gilenya or Tecfidera, but hit the MS harder with something stronger, enter Lemtrada (alemtuzumab).

I will admit my ears did prick up when I first heard about Lemtrada, it sounded quite interesting from an efficacy perspective and the fact that it was two infusion courses over two years, the first course of Lemtrada is five infusions over five days, one a day, the second year it's three infusions over three days and if all goes well, that's it. Though I will need to have a blood test once a month for four years lol, it's a newish drug that can have some nasty side effects, so the blood tests monitor what's going on so they can take early action in treating the side effect.

I will leave it at that for now as I still have to go through the tests, I also need to get a flu injection, and some other injection, something about infection risks when on this drug, from well, other infections. I will though list the main three nasty possible side effects from the literature that I received. 

LEMTRADA can cause serious side effects including autoimmune conditions and serious infections.

• Thyroid disorders
• A condition called Immune Thrombocytopenic Purpura [ITP]
• Certain types of kidney diseases

I'll sign off with
Happy, happy, joy, joy!
Readers can decide how to take that lmao