Wednesday, January 8

Oh Geez

So. Yesterday, I got the call re:my titer levels.  They're too high and I can't go back on tysabri…SIGH.

My doctor will like me to get started on gilenya as soon as possible. In fact, I was instructed to stop the Tecfidera one time. So I go in on Friday afternoon to get checked out for gilenya - essentially, they have to make sure I'm healthy (other than kiss meh ass MS). They need to do:
  • An EKG
  • Ah eye test (cuz one of the potential side effects is macular edema)
  • Blood work
After those results come back and I'm given the okay, the first dose of gilenya will be scheduled. This drug slows down the heart rate the first time it's taken so they monitor patients for 6 hours that first time - "I can't fcuking wait"...Ur heart rate goes back up (usually) by the end of that time period and will eventually go back to normal in 30 days. 

Gilenya is a once a day pill and Dr. Gilbert actually prefers it to Tecfidera (he says it's a stronger drug) so we'll see. Stacey prefers and wants Tysabri but I guess we can't always have what we want.

i hate fucking MS


  1. Let us know how it goes w/ the pill; I am TOTALLY sick of my daily injection! Doctor says I should stick with Copaxone until it stops working for me, like the Rebif did.

    1. i remember those days…i miss them but only because i wasn't disabled at the time NOT the daily shots…i cannot go back to injecting myself at all