I have only recently been diagnosed with lupus/SLE and since then I have read as much as possible about it, bought books on the subject, registered on many sites and forums. I am being treated by a rheumatologist who is currently experimenting with the right dose/combination of meds to bring me out of a long 'flare'. I fully accept that this disease has many faces and that it manifests differently in each person. I am trying to understand what the progression path is for this disease though, in general terms. I cannot seem to find a clear answer to that anywhere, so i was wondering whether some of you contributing to this forum who had to deal with this thing for many years could share their experience with their sle.
For example, are your sle symptoms worse now by comparison to when you first thought you might have it? Is that worsening taking place despite controlling medication? Did your sle start in a mild form (say joints and fatigue only) and then progressed to organs? If so, how quickly did you get there?
I know that this doesn't necessarily mean everyone will have the same experience but it would be so helpful to get a feel for this thing, I sometimes despair at how much there is to know about this.