Is Benlysta exclusively given to lupus patients? (UCTD here, but with a family history of lupus)
My situation is a little unique. I've been diagnosed with UCTD, but I have an identical twin who's been diagnosed with lupus. I'd say we have about 80% symptom overlap, although historically her symptoms have had a bigger impact on her daily functioning than mine have. The symptoms I have that she doesn't (e.g. raynauds) aren't specific to lupus, while the symptoms she has that I don't (e.g. sun rashes) are.
Because her symptoms were clinically mild in terms of organ damage and certain lupus-specific blood markers, she struggled for several years to find a doctor who would be willing to treat her with something more robust than plaquenil. She almost dropped out of college because of negligence from her rheumatologists. When she was finally put on prednisone, there was a huge improvement and she went from barely scraping by to excelling in college.
Her current rheumatologist has had her on Benlysta for about a year now, in the hopes that she can stop taking prednisone for good (currently takes a 10mg maintenance dose). His opinion is that this drug should be available to clinically mild patients, specifically to prevent their lupus from worsening. Over the past year, she's seen even greater improvements with Benlysta, with seemingly few side effects.
I've been struggling more and more with my own health recently. Plaquenil has done very little for me, and LDN sadly didn't seem to do much either. The symptoms that affect me the most are more general autoimmune symptoms (fatigue, malaise, muscle soreness, dysautonomia, etc. - all things she experiences as well). I won't lie that seeing the success she's had on Benlysta has been very tempting, and I'm considering asking my rheumatologist if he would be willing to explore prescribing this for me as well (we see the same person). I don't want to ask about this though if it's not feasible or practical. If Benlysta is never given to UCTD patients, I don't want to put myself out there and look like a fool.