My osteomyelitis is in my upper jaw and combined with sinusitis in the sinus cavity directly above. When the infection flares, it comes out through the nasal passage (blood, pus etc, sorry, but if you have this type of bone infection, you'll understand). In my case, this bone infection seems to be relapsing & remitting.
Am hoping maybe someone else on this forum has experience of sle & osteomyelitis. I'm especially interested in recurrence. Cause last week I met a marvellously fit 85 yr old man whose shoulder osteomyelitis does recur periodically (responding to streptomycin, I think he said) - he doesn't have SLE. But I know that osteomyelitis is a big issue in other autoimmune diseases eg diabetes, especially in the feet.
I grew up unaware of having been diagnosed with SLE as an infant & teen in the '50s-'60s in the usa. I moved to the uk as a v young adult. So, apparently, my relatively mild but increasingly debilitating sle set me up for a bad molar to lead into osteomyelitis because the very good dentist who did root canal on this molar in the early '90s didn't realise that the continuing lingering symptoms were significant. After multiple courses of antibiotics, the infected molar was finally extracted and replaced by an implant in 2011. Then i was diagnosed with sle and put on plaquenil 400mg daily, with limited positive effects.. Soon after that, my osteomyelitis flared and I went on long term daily aggressive oral antibiotic treatment for 5 months. After that, a CT scan was clear but ENT warned me repeat flares are likely after such a long term infection, so I'm trying to be alert to signs (without being paranoid).
I have always taken vvvvvv good care of my mouth and teeth, which i'm told are in v good condition, but my vvvv lupus experienced rheumy says that my sicca symptoms (not yet diagnosed with full blown sjogrens, but getting there, I suspect) mean I must be extra vigilant regarding any oral or dental probs.
So, if there is anyone here with lupus who has coped, or is coping with relapsing remitting osteomyelitis anywhere in their bod, I'd be very glad to hear how you have coped and are coping