Hi All -
I was recently diagnosed with "pre-lupus" - and am not sure exactly what that means. My list of questions for the doctor is growing by the minute but thought I'd post my story here for some input. It started about 6 months ago when I broke out in hives (after a medicine switch from a brand name to generic) - after the rash we switched me back to the Brand Name - but the rash has continued, off and on. I finally went to an allergist where they tested me for all kinds of stuff (mostly food, some enviornmental) and all came back fine. He decided to do bloodwork - he called to let me know that I had tested "slightly positive" for Lupus. (my ANA numbers were very high). I then went to my family doctor who said she wasn't sure it was necessarily Lupus - but maybe a connective tissue disorder, and referred me to a Rheumy. I had my first appointment with the Rhemy last Wednesday- and she said that based on the blood work, my joint pain (wrists, ankles, hands, knees), the rash and the way my joints looked - she said it is "pre-lupus". I asked if it would ever be full blown Lupus - and she said not necessarily, she started me on Plauenil and ran a boat load of other blood tests. I have a follow-up appt in 2 months; she said she would call me if anything showed up on the blood results. SO - I'm feeling confused, not 100% confident in the diagnosis, but mostly because I don't really know what "pre-lupus" means, and was caught off guard and not prepared to ask questions. I have other symptoms such as the fatigue, hair loss (not patches, but strands), and stomach issues.
So, just looking for input, experiences, opinions - etc. And other questions I should ask the Rheumy next time I see her. Thanks in advance.