As some of you know, I started Ocrevus infusions several months ago on June 22nd. After making it through infusion reactions and a week of wipe-out following each of the initial two half-doses (two weeks apart) I was back at my baseline no worse for wear. By mid-September, if not a little earlier, I was seeing some very positive signs even if they weren't always sustained (I continued to have good days/bad days, but the good days were getting significantly better). On September 11th, I had MRIs of my brain and cervical spine, as my MS specialist wanted to obtain a new baseline 2-3 months after starting the new treatment. Unfortunately, the MRI of my brain showed one new, 1 cm. lesion, which is apparently pretty good sized as lesions go. This was the first and only new lesion in two years since my initial MS symptoms, when MRIs revealed two dozen lesions in my brain and one in my spine at C-7. My MS began with a bang - literally knocked me off my feet and out of the blue one day, and I couldn't get up, or walk, or balance - at all - for the next several months. Gradually, I rehabbed my way back and have had impaired, but decent function since. That's a brief history for context.
The abrupt and dramatic onset of my CNS woes was very atypical for MS, and occurred in the same time frame in which I was developing symptoms that most closely resembled a serious connective tissue disease (systemic sclerosis/aka scleroderma). My medical team (I have a team!) was baffled, challenged, and searching for a link or trigger to tie the conditions together (we found one, but that's another story for another day). Too often, treatments for one condition were contraindicated in the other, particularly with so much uncertainty surrounding diagnoses. Frequent repeat MRIs stayed stable, and doctors thought it more prudent to watch and wait for awhile. That worked for a time, but the CTD symptoms were worsening, my walking was deteriorating, and it was agreed that it was time to treat. Rituxan was already being used off-label to treat both MS and systemic sclerosis with encouraging results, and Ocrevus was about to be FDA approved. My neurologist and rheumatologist decided that Ocrevus was the best choice to try, and said it showed promise in PPMS (my tentative diagnosis) and should be "at least" as effective as Rituxan for scleroderma and related connective tissue diseases. It was settled, and since I had started to go slowly downhill and was gradually losing considerable quality of life, I was more than ready to try something.
However, while waiting for my first infusion, I had a sharp setback, as I call them, and spent a couple of weeks mostly in bed too weak and fatigued to do much of anything. Looking back, we strongly suspect that time period was when the new lesion formed, but of course we can't prove it. New MRIs were briefly considered at the time but were ruled out and my neurologist said a new baseline after starting Ocrevus would suffice.
So, here we are. The good news for people following those on Ocrevus is that everyone seems quite certain that the new lesion formed before the full effects of B-cell depletion took effect. The possibly worrisome development is that I have once again taken a turn for the worse. The past week or so has been very difficult. This time my neurologist wants a new set of MRIs but said he will be stunned if they show any additional new activity because they just don't see that with B-cell depletion. We'll see. Something's definitely going on, and I've been struggling all week. The MRIs are still a couple of weeks away, I think. I'll update if/when anything changes or when I get the results. So sorry this is so very long - I thought I'd share a little more of my story since many are interested in Ocrevus. For what it's worth, I haven't soured on the treatment at all and remain hopeful and optimistic in the long run. I was told in advance that the best results occur further out, it takes time, and my own research backs that up. I'm staying patient and positive, but it sure has been a rough week!
Soooo impatient for next MRI... what should I expect?
Looks like my neuro wants to change treatment due to new lesion. 😔
Update to: Neuro apptmnt & Ocrevus
Changing MS drug to
