You have been given some really good advice here. I would like to add just a little bit more if I may.
Thje most "common" causes of death in lupus have been given as "overwhelming infection" and "kidney failure". KF is normally associated with SLE but not all SLE patients will have it of course. There should be no need for this to happen as patients who regularly see their rheumy can report any signs of a flare or being unwell immediately and treatments can be given. I feel it is imperative that you take your medications and if you cannot afford them, them take the course of action offered by the other members in regarrd to getting assitance ith the cost.
Another thing that I would like to mention is that symptoms vary from patient to patient. They even vary within one patient from time to time. Lupus is an illness - sorry I have never liked the word disease personally - that can attack different organ systems of the body, and it therefore affects everyone differently. When we say organs, it doesn't always mean our internal organs of course. Your skin is an organ as you know, and some people have problems with discoid lupus and its subsets.
Of course it isn't only medications that play a role in our health when we have lupus. Diet - nothing special, just a well balanced nutritious one - exercise - when we can manage a little - lving as healthily as we can and more importantly keeping out of the sun, are just some of the other things that are good for us lupies.
I would seriously consider looking into getting assistance to help you get your medications as I said previously. Also I think that the doctors you spoke of need educating more on lupus and its implications. No patient wants to have sush harsh thing said to them, and need care and attention and of course undersanding of their situation.
Post Edited (goldenwings) : 4/21/2007 5:54:39 PM (GMT-6)