Dx in 2002 after 2-3 years of increasing fatigue, where I could sleep 18 hours and still be exhausted. PCP did an ANA, suggested it might be Lupus or something similar, and sent me to what turned out to be a fantastic rheumy.
Rheumy took note of my symptoms, prescribed Plaquenil, Prednisone, and later Imuran, then Cellcept as things continued to get worse. Neuro-psych testing said my cognitive dysfunction was so bad I'd lost 20 IQ points. Lots of random joint and muscle pains. Couldn't follow a 20 minute sitcom, or remember where I was well enough to drive safety. Slept away 4-6 years, maybe more. Lost my career, my friends, my interests, couldn't hardly call it life.
Cellcept was totally a MIRACLE drug for me, after 18 months on it I was headed into a "quiet phase". (They don't say remission with Lupus or other auto-immune diseases.) Eventually I was able to come off all medications, even Plaquenil!!! (Highly unusual to come off Plaquenil.)
I was very weak at that point, but have been able to work back up to a reasonable level of fitness. Most of my brain is functional again, but I don't learn as quickly or as easily as previously. I won't ever be the marathon runner or PhD level researcher/engineer I used to be, but life is good.
Lupus can be a difficult disease, and every case is different. If you don't believe your Dr is working with you to improve your situation, there is no stigma in finding another Dr. I've known people who've gotten progressively worse, people who hold steady for a long time, people who've gotten better quickly, and people who get worse then better. No two patients are ever the same.
Let us know if you have any specific questions we can help you with!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde