Ocrevus update: still early, but cautiously optimistic.
Relevant history: officially diagnosed with PPMS in April of this year, although there is some uncertainty in my case. I have approximately 40 (!) white matter lesions in my brain and 1 in my spinal cord at C7. My MS had a very aggressive onset, and occurred in the same timeframe as at least 2 other autoimmune conditions, and as such it is sometimes difficult to determine which condition is responsible for which symptoms. Ocrevus is my first MS drug, and is expected to help my other autoimmune diseases as well. My first half-dose infusion was on 6/22 and the second was on 7/6, so it has been about 4 1/2 months since I started.
While I have had some intermittent encouraging signs and better days over the past couple of months, for the most part they haven't been sustained so far - lots of day to day variability, in other words. There have also been a fair number of short-lived but rough setbacks mixed in. However, this past weekend I had the two best days I've had in the two past years. Something was clearly different; I was walking easily around the house without the walker, pain was minimal, I felt energized and motivated, and just started seeing things that needed doing everywhere - and doing them! I felt almost "normal" for awhile, and pretty productive for a change. Much of the last 2+ years have been spent on the couch or in bed with legs that were unreliable on a good day and useless on the worst days. Fatigue has often been incapacitating, and that symptom actually has shown fairly steady improvement for a couple of months, which is pretty huge. I don't know if my weekend visit to a glimpse of my former self will turn out to be fleeting, or if it's a sign of things to come. I hope and pray it's the latter, but am determined to continue to be patient, recognizing that it's still very early to evaluate effect for a B-cell depletion therapy. I'm sure there will be many more ups and downs along the way, but at the moment I am optimistic and wanted to share so others who are also early in the process can feel hopeful and encouraged too.
Ocrevus... Update!
