so i’ve been on hydroxychloroquine for 6 mos now and i gotta say, it’s been a game changer for my lupus symptoms. the fatigue is still there but it’s manageable, and i’ve had zero major flares.
i’m also taking prednisone but at a much lower dose than before. anyone else have experience with this combo?
what were your results?
zero major flares sounds like a huge win, tbh. when you say “manageable” fatigue, what does that mean for your baseline activity now, practically? like how many hours of focused work or upright time do you get before
what do your c3/c4 levels show after 6 mos?
Fatigue management is such a delicate balance, and it sounds like you’ve found a combo that’s working for you, which is fantastic. When you say “the fatigue is still there but it’s manageable,” that really resonates with me, as I’ve been trying to nail down my own patterns with daily tracking.
I’ve noticed that my C3/C4 levels tend to drop before a flare, and I’m curious, have you noticed any similar patterns with your lab work? I’ve been using a tracking tool to log my symptoms and labs, and it’s been helpful to see the trends over time, like how my energy crashes at 2pm every day.
I handed my doc a csv export at my last appt and she actually looked at it, which never happens with the other apps, so that’s been a game changer for me in terms of getting my rheumatologist on the same page. Anyway, I’m glad to hear that hydroxychloroquine has been a game changer for your lupus symptoms, and I’m interested to hear more about how you’re managing the prednisone dose, as I’ve been trying to taper off mine with mixed results.
six months is a good chunk of time to see real results, you said “game changer” which is what i’m hoping for with my own treatment, but i’m still figuring out my flare patterns
six months in is a good test of hydroxychloroquine’s effect, you said “game changer” which sounds promising
“zero major flares” sounds like a win, honestly. i’m curious what that looks like for you day-to-day though, like what’s your baseline pain on a good day now? bc sometimes “game changer” still means you’re operating at a 5