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Friday, 18 September 2015

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