Peggy thanks so much! That's how I feel! Dawn and Desiree, I WISH it was that easy here! There are exactly 5 FIVE in Jax! And we are military so there are very limited choices as to who I can see anyway. But the one I saw prior to this one was a nut case. She told me she couldn't help me because I wouldn't take the meds she wanted me on that were increasing my seizures. My Neurologist even told me to stop because that med lowered seizure thresholds (I had 6 in one day). But she wanted to fight me on it. My previous amazing Dr retired, and now we are with #3 🤦‍♀️

Your labs results will fluctuate, and most doctors don't just diagnose lupus only from tests; they incorporate patient symptoms as well. You may be in remission now, but doesn't change the fact that you have lupus.

YES! ALLLLL of what you just said! I always give them copies of all my previous test from prior DRs. I keep a whole folder because I'm on disability! I also bring them over the results from the hospital. And yes I was on the steroids to bring down the inflammation of course. As I seriously could not even walk. So how once they test me again in my normal state and things look good, they can say I don't have Lupus as all these other Drs and test show I do, is confusing to me.

Another problem with experimental drugs is that possible interactions with what we already take are TOTALLY UNKNOWN!!!!

If in doubt, I've always found it helpful to see a rheumatologist/lupus specialist at the closest university medical center. I would NOT try any unproven, experimental treatments, unless you agree to be part of a study at a university center. Usually, plaquenil is continued regardless of your lab results, but get a second opinion from an expert before stopping treatment completely.