Waiting for my next MRI has been killing me for the past 6 months. I so want to hear that Ocrevus works. Because I can't stop thinking about it, I decided to put my thoughts on paper and then it was like - well, I am as well share on this forum.
December is a big month for my MS. I just had all my blood tests done before getting the next round of Ocrevus (2nd round, 1st full dose) - waiting for neuro's input to schedule. The MRI check is scheduled for the 17th. I keep thinking about what to expect and how I might react to it. Here's how I think about it from best to worst:
(1) No lesions (unrealistic)
(2) No active lesion and no new lesion (thank you, I got served enough with 20+. It looks like Ocrevus is doing its job. This is probably the best Christmas gift I can hope for).
(3) No active lesion but new lesions that are inactive (ok, the monster is dormant. The new lesions might have come from the in-between time of last MRI and first time of treatment. Very similar to 3)
(4) No new lesion, but some existing one still active. (Well, not what I hoped for, but I probably need to give Ocrevus more time to go full effect. It's reported that it takes up to 2 years for Ocrevus operate fully)
(5) New lesions that are active. (It will be disappointing given how much better I feel. But again, I might need to give Ocrevus more time).
Now it's on paper. I can start to forget about it.
Am I off base?
Written by
anaishunter
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No! never off base. It is what you feel. Like you say, it's on paper [virtual paper in this forum] but you won't forget it. If you were to ask me, I think number 4 is your best option. It took me 7 full infusions of Rituxan [akin to Ocrevus and an infusion every 6 months] before my Neurologist declared me stable [no new lesions and no signs of ms activity]. I think with patience and time, Ocrevus will be the same for you as well. I think it is too early to tell. Anyway, my 2 cents worth. I wish you the best in your journey ~ terry
Ms-Indestructible - thank you so much for taking the time to provide feedback and help me reset my expectations. Now I can enter this next round with realistic expectations and not be disappointed.
You are welcome. I've learned to turn my expectations into anticipations, that way I don't get too disappointed. I believe that Ocrevus is "better" for fighting the ms than Rituxan is, so the results may differ plus we all are different so the result will be different. The main thing is to believe that the Ocrevus will work unless proven otherwise. It takes time. Our society "expects" instant gratification or "success". So just give it time. You might find changes in your symptoms as I did. They might be subtle or as others found them to be quit noticeable. Either way I believe in the long run you will not be disappointed. You might do a search on Ocrevus and read what others in our community have reported as their experience with their first full infusions. Feel free to post what ever you feel is helpful to you. Some post to vent, that is what makes our community so strong, others will reply to support you. Take care
Wishing you any of 1-4 on your enumerated list. Trust how you are feeling. You are on a proven DMT. Now you have explored all the options in writing so no monsters under the Bed.
Not off base at all. Whatever makes sense and helps you sort things out.🌹
I wish you the best. I'm on Rituxan and even though I had a little bit of a reaction this time around, I've been feeling alot more energized then normal but I'm still careful not to overdue things. ❤🌷
that was a smart thing to do. Just a questions do you know what these lesions you fear actually do? Not being rude but if you do not know where and what to do why fear them. Just asking.
you have a point. but lesion = damage -> symptoms now or later, especially if the lesions are active.
On the first MRI review, it was great that the neuro took the time to walk me through all the views of my brain showing me where the lesions are. On one, he said "this one is most likely related to your double vision." But I guess that like everything related to MS, it all tentative, nothing is definitive or for sure.
The lesions I'm actually more concerned about are the ones on the spine, because there's just less redundancy there and they're related to mobility.
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