It's been quite a while since I last wrote, over three years in fact. I guess I've just been getting on with that business we call life. Anyway something happened a while ago that has prompted me back to the keyboard.
The last time I blogged I was having to make the decision about changing drugs, well fast forward 3 years and here I am deciding about changing meds again. Three years ago the decision was pretty much made for me, the MS nurses were very keen, I suspect being pushed by the Consultant, to get me to decide and as the only real option at the time was the new tablet, Gilenya it was. As predicted I had a horrid relapse while changing over, but given what was happening at the time I'd have been surprised if I hadn't, that's a different story and I'll come back to it another time. Decision made and in November 2014 I started taking the new medication, no more IV's for me, just a tablet once a day at home. What's not to like?
I had my relapse a couple of months in, before the drug really had time to get established and was hopeful that was the worst over. However I never really felt well on this one, my fatigue got worse and I just generally always felt like it was an uphill battle. Every time I saw the Consultant I'd ask to go back on Tysabri, he always smiled and politely refused, and I was beginning to think it was in my head, that I was imagining feeling worse. I didn't have any massive relapses but I started getting lots of little ones every few months, it was draining. One time I had the most dreadful trigeminal neuralgia which lasted about 3 weeks. I was so exhausted I was pretty much falling asleep at my desk, but as I hasn’t had a big relapse I thought it was Ok. I got slowly but increasingly worse and the last 12 months or so saw my mobility deteriorate and me using two sticks all of the time, something I’d been resisting for years. So all in all when I got the voicemail from the MS nurse saying she needed to discuss my MRI it was no great surprise to find I had new brain lesions.
The issue this time was that there was now really only one alternative, everything else on offer I'd either failed already or just wasn't strong enough, which brought me to where I am now. The one drug I'd been adamant all along that I didn't want to take was now my only option. I say my only option, the other option was to carry on with the Gilenya and hope for the best. The problem with this approach is that the damage can't be undone. New lesions cause brain damage which once damaged doesn't heal, which in turn causes more symptoms, or worsening symptoms. This can affect mobility, cognitive symptoms, anything really, and once its gone its gone. Oh and there's no way of knowing what will be affected next. So as they say, time is brain.
So there's really no choice, there's a drug that could put a stop to that, for at least a while. What is there to lose? Lemtrada it is then? Well as always with the big wins come the big risks, a drug as potent as this comes with some pretty big hitting side effects. The drug was previously used as a treatment for Leukemia, so that will give you an idea of how it might affect you. The short term common side effects of rashs, headaches, compromised immunity etc are nothing compared to the longer term risks of thyroid damage, kidney failure, blood disorders that stop you clotting, increased risk of malignancies etc. All of a sudden its a slightly more difficult decision to make. Big rewards, big risks!
So decision made, we're going with it. Lemtrada here I come. Am I apprehensive, no, I'm bloody terrified. The MS nurse said to prepare myself for a rough year or so, if she's saying this and she's the really positive one, how bad is it going to be? I guess I'll be finding out pretty soon. For newly diagnosed and treatment naive patients it does tend to be a wonder drug. However I'm slightly longer in the teeth and on the other side of quite a few different drugs with varying effectiveness. So I'm approaching this with a hint of pragmatism and lots of positive thinking. My hope is not for the miracle, but just for a bit of a break, some time with no disease activity, not getting any worse, some stability. If it can hold me where I am now I'll take that!
So Lemtrada, lets have you!!
