i’ve been on kesimpta for 6 mos and the fatigue is still hitting me hard… i’m talking can’t-get-out-of-bed, can’t-concentrate, just wanting to sleep all day.
anyone else experience this? i’ve been trying to track patterns but it’s hard when the fatigue is unpredictable.
been using careclinic to log my flares and what triggers them, trying to find some correlation
fatigue spikes sound brutal, you said “can’t-get-out-of-bed” which is kinda where i’m at too on bad days with fibromyalgia
same fatigue spikes here, “can’t-get-out-of-bed” is my reality too, been using reminders to stay on track with meds and logging flares
that’s my take.
are they checking your complement levels monthly?
“unpredictable” is a good word for it. that “can’t-get-out-of-bed, can’t-concentrate” feeling is exactly what i’m trying to outrun with my own autoimmune stuff.
for me, the fatigue often feels unpredictable but i’ve found my complement C3/C4 levels start dropping about two weeks before everything falls apart. my rheumatologist only did yearly labs, so i had to push my GP for monthly bloodwork to even see that pattern.
logging every little thing that might set it off, even from my watch, has been the only way i’ve spotted that C3/C4 window.
is your “can’t-concentrate” fatigue like a fog or more like a crash?
Freshly working through the complexities of Kesimpta, I noticed you mentioned being on it for 6 months and still experiencing debilitating fatigue, describing it as “can’t-get-out-of-bed, can’t-concentrate, just wanting to sleep all day”. This sounds incredibly challenging, and I can understand why tracking patterns would be tough with such unpredictable fatigue.
You said “been using careclinic to log my flares and what triggers them, trying to find some correlation”, which is a great approach, as sometimes seeing it all laid out can help identify patterns we might miss otherwise. I’ve found that in my own tracking, certain features like the correlation view can be really helpful in pulling out patterns between different symptoms or triggers, though it’s not a substitute for medical guidance.
Regarding your fatigue, I’ve heard that some people experience a spike in fatigue during the initial phases of treatment, but it’s not universal, and it’s concerning that it’s persisted for you. Have you discussed this specifically with your neurologist, and are there any other symptoms or side effects you’re experiencing that might be related to the Kesimpta or your overall condition?
Freshly going through my own logs, i see what you mean by “can’t-get-out-of-bed” fatigue on Kesimpta. when you say “unpredictable” that’s what gets me, bc i’ve found that even with the best tracking, some days just feel like a mystery.
“been using careclinic to log my flares and what triggers them” - i do the same, and one thing that’s helped is the apple watch complication, just makes it easier to log stuff on the go. but even with that, i’ve had days where everything looks normal, and then boom, fatigue hits.
idk if it’s the same for you, but for me, it’s been about narrowing down the variables, like looking at my histamine intake, or if i’ve been stressing too much. ymmv, but i’ve found that sometimes it’s the smallest things that add up.
feeling that ‘can’t-get-out-of-bed’ fatigue without a clear pattern is tough. i’ve had times where my own mcas flares felt random until i zoomed out on the data, sometimes the weekly trend summary in careclinic makes invisible triggers visible, even if the daily feels random.
unpredictable fatigue is a whole different beast than just being tired. i get that feeling, the “can’t-get-out-of-bed” kind, and it’s rough trying to make sense of
“unpredictable fatigue” is a beast. that kind of deep, can’t-get-out-of-bed feeling, i know it well from my own fibromyalgia flares, sometimes hitting me hours after i thought i was