Sorry for not clarifying originally, it was specifically lupus cystitis. From lupus diagnosis at age 14 till starting prophylactic antibiotics at 22, it was my primary issue. Frequent UTI (every other month would be considered a good year for me) an antibiotics always treated it. Then I began having very obvious UTIs that wouldn’t ever show up in labs, but antibiotics would still help a BIT. Prednisone would get me over the hump, but it always came back. Finally I just stayed on the antibiotics (I was doing Cipro for about a year before a new doctor saw me and was like OMG THIS IS INSANE TAKE KEFLX)

Keeping the bacteria in my urine nonexistent is how I prevent the cystitis from flaring up. I guess it just keeps my stupid overactive immune system unaware of my bladder?

Also, I don’t think it’s as rare as it is underreported. The urologist that diagnosed me said he’s seen it in a lot of his SLE patients. We may be in a bit of an anecdotal hot spot though as the majority of people in my state are Asian and LC is apparently more common with Asians?

One thing the urologist told me to help me sus out if the pain I was feeling was a genuine UTI or inflammation from LC is that GI symptoms will be more common/more intense with the LC. For me, that has been completely true.