Should I find a new rheumatologist?
Started this journey officially in Nov of 2024, went on Plaquenil in June of 2025. It definitely has helped -- but I've had a series of flares this last month or so and am trying to decide if it is worth seeking a second opinion or if my expectations are mis-aligned.
My current rheumatologist seems to go strongly off lab work - which I have no organ involvement, so my labs are "ok" - but also am not super functional when flaring (sleeping a ton, joint aches are horrible)
I actually got a Lupus diagnosis last spring (positive antiDSDNA, it's been truly positive twice now, indeterminate the other times tested). C4 has been consistently low over the last year. My anticentromere B antibodies are also high - not sure if that is complicating things from a diagnostic perspective. Last March he diagnosed (and charted) Lupus, when I saw him again in October and antiDSDNA was back to indeterminate, he went back to undifferentiated.
The biggest struggle I am having is he is very conservative with medication - which I dont necessarily disagree with, but also, quality of life has to count for something also? I have twice now gotten a steroid dose pack when in a flare from my PCP which has seemed to help - but the first time it happened I reached out to the Rheumatologist and was basically told - your symptoms all could be viral, so *shrug* (I was exhausted, low grade fever, body aches, just felt like I got hit by a bus. negative for covid and no respiratory symptoms. Blood work that time showed low WBCs for the first and only time as well).
Does your rheum offer options when you are flaring like steroids or should I expect to need to go to PCP? Should I be thinking about other long term medication options/more aggressive treatment? or does the lack of organ involvement mean I'm just sorta stuck here?