My initial infusion was just over a year ago. When I was originally approved to go on the CHORDS trial, I was super excited. I really had high hopes for this drug and it's capabilites. After a year, and 3 full doses, I am not so sure that it is doing anything for me. The only good thing is that my MRI doesn't show any significant findings. Otherwise, I continue to degrade in pretty much all my symptoms. A year ago, I could still walk around without a cane, although with a limp and balance issues. Now, I cannot walk without the cane, and am on the verge of getting a mobility scooter. I am seeing a little relief now that the weather is getting cooler, as I had a very difficult summer in the heat. I battle fatigue on a regular basis. Most of my symptoms are not he right side of my body, but are starting to get worse on my left side. I was hopeful for the miracle and potential that Ocrevus was supposed to deliver, but apparently, I am part of that small percentage where the drug doesn't work. I am committed to finishing the trial, but will have additional conversations with my Neuro on alternatives. I truly hope that this drug works for all those who are using. I also hope that it's just taking longer for me than usual, and that I'll start seeing results. Good Luck everyone.
Oh my goodness, this is so me. Granted, I just started Ocrevus this summer, but see only worsening. And the sudden collapsing of my right knee while walking or standing, started up again this weekend. Seeing neuro in a few days for a routine check to see what he says.
ReplyDelete--Kim