I was also diagnosed with SLE and APA. I haven't really had many major problems due to the SLE. But, the APA, a different story. I lost 6 pregnancies in the 2nd tri., finally my husband said he had enough and my tubes were tied while I was still under anaesthesia. I woke up to the news that my tubes had been tied and I could no longer attempt to have a child.
10 years later, I passed out on my kitchen floor. Fortunately my partner was there at the time. I came to and I was blind. Completely blind. That lasted for about an hour before my sight slowly returned. I was hospitalized for over a week with not much going on, not allowed to leave my bed. I could not even go to the restroom. The doctors and nurses had no idea what I was trying to tell them. This was a very small hospital in a very small Cape Cod town.
Fast forward, I left. I found a new rheumatologist. When I lived in California, I had the best. I would roll into LA every 3 months for testing, etc. Now I get whatever. So finally, the new rheumy tells me that I have very high titers of APA, but that's OK because I don't really have any symptoms. Hell, did you forget that time I spent the hospital not even knowing my name?
So now I have major sores in both nostrils. My skull has huge lesions, as well as my nostrils. I seem to bleed quite a bit. I wake up in the morning with blood on my pillowcase.
I need to find a decent rheumatologist. I am not getting any younger. I am just into the senior citizen stage and I am afraid this disease is ramping up.
BTW, My joints , oh my joints. I have a fake shoulder, reverse on the left arm. So painful. None of my back surgeries even came close. Complete metal ladder in my c-spine and metal in the l-spine since 38 years old. I was supposed to have the right shoulder replaced this past September. They informed me that I would go home the same day. I live in a state that does not allow any medication above 10mg oxycodone to be taken home for a patient's use. I told them to go pound sand. Last time around I needed morphine injections. After my back surgery I ditched the pain meds after 2 weeks.
Sorry if I went off the rails. I feel at this point,I've got nobody in my corner medically. My hubs is completely supportive, but he's a carpenter not a body fixer. Though maybe he could. Sorry.