I spent a good 15 years, really suffering with lupus (SLE). I was only on plaquenil briefly. I had better luck with Prednisone.

It was hard. In retrospect, I think it would have been helpful for me to have people around me with an upbeat, positive attitude re: the entire ordeal. I briefly went to a support group, but sadly, many there were really down and negative. IT is very understandable, but I think we needed more of a balance or perhaps at least someone heading the group who was stronger.

Now I have Sjorgens Syndrome. Just found out through blood work. I had the year from "hexx." Perhaps the stress did me in. Main symptoms for me are: dry eyes, dry mouth and fatigue. I also have migraines.

Anyway, re: the lupus....see the doctor regularly (mine wanted me to see him every month, but I think every 6 to 8 weeks is probably ok...depending on the situation), keep positive, do what you can, when you can. Watch your diet.

Really try your very best to eat in a healthy manner. For me, this really helped. Some things to consider: reduce sugar, flour and meat. No soda, diet or otherwise. Either no or very very very little alcohol. Eat lots of vegetables and fruit, perhaps a small amount of meat/fish and a moderate amount of very healthy starches like whole wheat bread, brown rice, etc. Pay attention to what you eat, and if something seems to bother you, don't eat it. If you are overweight, consider seeing a nutritionist.

If you find the dx frightening, consider therapy to help talk your way through the ups and downs.

Really try your best to avoid stress...but keep in mind, this is not always possible. So, when stress is unavoidable, learn how to cope very well. A therapist can help with this as well.

I found that as I got older, for the most part, the illness got better and even today, when it becomes a little active...I am able to deal with it a little better.

Best wishes for good health and happiness.