WBC in Urine and Kidney Inflammation?

[Kris29]

Sorry for posting twice in a row! This has been a really crazy year. We lost a baby to a birth defect unrelated to the fetal heart issues SjS can cause. And now I'm trying to get on top of my SjS questions that I haven't had time for. I want to be as healthy as I can before we try to grow our family again and make sure nothing new has popped up on the autoimmune side of things. I have a couple of questions I was hoping you could help me with before I make an appointment.

Dx SjS a couple of years ago. My first big question - Should I be on Planquenil? I've read that younger presentations (I was dx at 27) and SSA without SSB both tend to be more aggressive. My previous rheumy says that as long as my symptoms are manageable and my inflammation markers stay low, I don't have to be on anything. But I'm worried about long-term impact of letting low-level inflammation act on my body, if that makes sense? But I'm also concerned about being on Planquenil if I don't need to be. Does Planquenil actually slow progression or just help with symptoms?

Second question - (and related to the above concerns!), I've now had two different urine cultures in the last year come back significantly high for white blood cells. Both times no sign of urinary tract infection, the most common cause. Another cause can be kidney inflammation, and I know SjS can go after kidneys. I had these tests done by different care providers, so I'm the only one right now who knows it's happened more than once. (The second time it happened, my doc didn't even bring it up. I just saw it in my lab results at home after my appointment.) Obviously, I'm going to bring it up with my new rheumy!, but has anyone else had this happen with SjS? And if so, what did it mean in your case?

My maternal-fetal medicine specialist freaked me out a little during this last pregnancy. He thought my blood work (SSA without SSB, specifically) and history of mouth ulcers pointed more toward lupus than Sjogren's and wanted to follow my liver and kidney function throughout the pregnancy. Maybe he was just being cautious, but it made me want to have labs rerun and make sure my kidneys seem ok before trying to conceive again. Anyway, thanks for any insight.