20131205

C'mon! Really?

I had my neurologist check-in today. And the easiest way to explain it is that was the worst I've ever felt after getting out of the office, including my MS diagnosis (I already knew I had MS). My day has declined into an abysmal disarray of incomplete and incoherent thoughts, none of which come to any sort of conclusion. Other than my decision to get off of Tysabri. Yes, today I've decided to leave behind the drug that has kept me symptom free for the last four plus years. Though not today, in June 2014.

It isn't with an easy heart that I am diverting course from my treatment on Tysabri. It has been great...I've been living a life like I don't have MS. I wouldn't know anything is different from the day I started this miraculous drug. But it is a proverbial deal with the devil. And my deal in particular was especially dangerous.

I found out my JCV antibody load today. Not a number but a spot on a graph. Down at the bottom of the graph were a few dots that increased the further up you went on the graph. Then came a dashed lined followed by a grey area and ended with another dashed line. Within the grey area were a bunch of · and X. I was one of the ·. X marked cases of PML.

I assume if you are aware of danger that is PML, you realize my conundrum.

My doctor said my risk right now was roughly 1-in-100. 1%. Odds with which I absolutely can not live.

When I heard 1-in-300/600 when I first started, depending on my risks, it was a chance I was willing to take. Now, I have no choice but to discontinue with the course that has been such a successful treatment. I've had no MRI activity during my treatment of Tysabri. My treatment on Avonex really sucked, and there was still activity on my MRIs. So here I am left looking at either Gilenya or Tecfidera.

I can't turn into an invalid, or worse, be ended by the very medication that was helping to stop my MS. I have until June to choose one of the medications above. Tecfidera is looking like the answer now, but things can always change. Until then I'll be changing my Tysabri treatment to every two months. The six weeks seems to be working well, as it is, so hopefully this will let the antibodies in to combat any JCV that may make it past the BBB.

No comments:

Post a Comment

SPAM is strictly prohibited and will be removed!