When I was at the Dr. Monday she sent me to the rheumatologist to be checked for having Bechet's disease, due to genital blisters and a history of recurrent mouth ulcers, on top of the lupus she had diagnosed me with 5 years ago with criteria, bloodwork, titer 1:160 and +ANA. The rheumatologist said that since the ana was negative on the bloodwork my Dr. did a few weeks ago, that it means I don't have lupus. He said the ana can never be negative with lupus. I told him my Internist said after it was originally positive, and you have the other criteria, when it later becomes negative that means the plaquenil is controlling the lupus, that once you have been diagnosed with lupus you will always have lupus. He said I obviously have arthritis and seems to think I have a different auto immune disease or diseases and Bechet's, that bechet's has a lot of the same symptoms as Lupus. He is doing more bloodwork. I would appreciate any information, I am confused and don't know what to think.
Hi, welcome to the ehealth forum and I am glad to help you.
You seem concerned about the diagnosis of lupus being revised after you tested negative for ANA and alternative diagnosis being considered for you like Behcet's disease etc.
Lupus is an autoimmune disease in which tissues and cells undergo damage mediated by tissue binding autoantibodies and it affects the various systems in the body. The diagnosis of lupus is based on clinical features and autoantibodies. Some criteria having 11 components have been devised which is commonly followed and if patient has any 4 of these during the course of disease, the diagnosis of SLE is likely but not definite of course.
ANA are positive in >95% of patients during the course of illness but if you get repeated negative tests, it suggests that the diagnosis is not SLE. ANA negative lupus exists but is very rare and is usually associated with other autoantibodies (anti-Ro or anti-DNA).
You can get ANA repeated and keep follow up with your rheumatologist for other tests to reach definitive diagnosis in your case.
Hope this helps. Take care.
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