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Wednesday, May 4, 2016
Hi, I have been diagnosed with SLE for over 8 years now. Today I went to my rheumatologists office and he undiagnosed me because none of my bloodwork is positive. He compared results from August and April. (I just started seeing him in August when we move d). Even though in the past I have had highly positive ANA and positive anti SSA and SSB, they are all now negative and have been since I have seen him. Since I have not had any problems to speak of since we moved he now says I don`t have SLE. He cites the fact that tests are negative, I have no malar rash, or swollen joints. He has never seen me when I am sick so doesn`t know what it has been like. I have been on prednisone for the past 2 years at 5mg. Could this have caused the negative antibody tests? Could I indeed have been misdiagnosed? I have had malar rash, swollen knees, pleurisy, pericarditis, fatigue, low C# C4 levels, severe reactions to sun, etc in the past. He now says all my problems are due to low IGg and IGa levels. He is doing more testi ng but says I have Common Variable Immununoglobulin deficiency. (I never get sick and never have sinus infections, ear aches, bronchitis, etc. all common from what I read). Please help me, I am so confused. Could I have been misdagnosed or could the lupus just be in remission? He wants me to stop Plaquenil and wean off prednisone. I would be thrilled if I don`t have SLE but worry that stopping the drugs will cause it all to come back. I realize you can`t make any recommendations on treatment,etc. I just want to know can lupus go into remission so that I look normal with no sign of disease showing physically or in bloodwork. Thank you so much.
It is impossible to know whether you have or previously have had lupus. Lupus is a difficult disease to diagnose since it can present in many different ways. To answer some of your questions: Antibodies can become negative - this occurs most often after some of the immunosuppressive agents such as cyclophosphamide, and it may occur after high dose steroids. Lupus can go into remission.
Anne-Barbara Mongey, MD
Formerly, Director, Arthritis Clinic, Univerity Hospital
College of Medicine
University of Cincinnati