back after a bit of a break. so i’ve been on ocrevus for about 6 months now and i gotta say the fatigue is still kicking my butt. i was hoping it’d get better after the initial infusion but it’s been a steady companion. anyone else experience this? i’m talking exhaustion that sleep doesn’t fix, brain fog that makes design work a chore… i’m on kesimpta too but that’s a whole other story. what i wanna know is: does the fatigue from ocrevus ever actually fade or is this my new normal? i’ve been tracking my symptoms and it seems like the fatigue spikes after each infusion. imo has anyone else noticed this pattern? that’s my take.
what exactly tracks that fatigue spike after infusions?
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that exhaustion that sleep doesn’t fix you’re talking about is exactly the deep, bone-weary fatigue i get from my own biologic. i’m still only a few weeks in, and my rheum warned me it could get worse before it gets better, so i’m watching the 3-month mark for any shifts.
your pattern of it spiking after infusions makes a lot of sense, it reminds me of how my c3/c4 levels drop about two weeks before a full flare. are you pushing for labs right around those spike times, not just on your regularly scheduled appt?
bc the single lab snapshot often misses what’s actually happening. i started logging sun exposure too since that also seems to move my c3/c4 needle.
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the spike after each infusion is a clear pattern, and worth noting. i’d wonder what other metrics you’re tracking on that same calendar.
often, what you aren’t asking the body to do during those periods becomes part of the data too, even if it’s just a drop in design hours. a granular log of “brain fog” over many months is hard for a study to hold, but your own daily output might be the clearest proxy for its actual impact.
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fatigue spikes after each infusion, yep
my fatigue definitely got worse for the first several weeks after starting my biologic, so i completely get that “exhaustion that sleep doesn’t fix” you’re talking about. it’s a deep, bone-weary fatigue that regular rest doesn’t touch, and it felt totally different from just being tired. i started carefully logging my energy levels
that pattern of fatigue hitting hard right after an infusion is a real pain, especially the ‘exhaustion that sleep doesn’t fix’ part. it’s the exact kind of specific tracking docs need to see to understand what’s actually happening, not just general ‘i feel bad.’ have your docs actually looked at that data you’re pulling from your tracking to see if they can pinpoint any specific windows?