I am 54, a nurse, mom with two daughters, a grandaughter and a husband who is my lifeline. I wasn't diagnosed until 2005, but knew I was seriously ill 6 years before that. Lupus is a "target organ" disease, that is, a disease that can affect different organs, at different times, but the commonality is inflammation, which is what is essentially to blame for everything we endure, especially during a "flare" which is a sudden increase in systemic, all over the body, inflammation. Inflammation is characterized by redness, warmth, swelling, pain, and impaired movement. In lupus, it is often inside us, not visible, like it is if you sprain your ankle for example. My SLE is CNS lupus, that is, it targets my nerves. So I fall, have ataxia, feel horribly weak, my legs can swell, my brain swells, my thoughts get impaired at horrible times, and I am taking the standard "lupus" meds that help the symptoms, Plaquenil, Neurontin and prednisone are the ones that help me the most. I started Plaquenil first, then Neurontin for the nerve pain, the every nerve in my body crawling and cold and twitching from the inside, kind of pain, and for two years, tried to manage the flares, including pneumonia, that happened every 3-6 months. My prednisone prescription was 40mg daily for a week, then 30, then 20, then 10 then skip a day then off. The only time I felt well was my high dose week. The roller coaster of ill to iller was killing me. So then the doc said, lets try whatever daily prednisone you think you need, and get to the lowest dose that works, which turns out to be 5mg every morning. I feel best in warm summer weather so I have his ok to try weaning down to 2 1/2 mg. I have tried once and it didn't work, cause it was spring and I got an allergy triggered sinus infection. My dr. is great and said there are some lupus pts. who do best on a low dose maintenance, and until I want to stop working, I take the prednisone. I have yearly eye exams for the plaquenil, and a bone density scan to stay on top of the osteoporosis risk from the chronic use of prednisone. When I am not taking prednisone, I fall. Alot. I hope I have answered some of your worries, it is a blessing to have this site to share.
p.s. I have had the same dratted problems with the gremlins in MY computer deleting my emails, too
God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.