carey
02-21-2008, 11:55 PM
hi, i am new to this site. Up until July 2007, i was very healthy. i started with lip,facial swelling,joint tenderness with swelling. i also swell on my feet, fingers, i describe as a hard, reddeded, itchy,burning sensation. in september i woke up with my tongue swollen and since then, i carry an epi pen with me at all times. in the fall, i saw a rheumatologist and have been worked up for lupus, it comes back negative.my mom has a history of rheumatoid arthritis. i am also negative for that. the docs say this is angioedema but they can't find a cause. i am an RN and work in an er, two weeks ago, my left hand became so swollen, that my wedding ring had to be cut off. last thurs, i woke up with facial swelling and within 2 hrs, was using my epi pen. the rheumy md says atypical lupus but everything is negative, was started on plaquenil in november. last week was put on imuran, an immunosuppressant. i am really frustrated with all of this. i went and got a 2nd opinion from IU rheumatology(Indiana University) and he was not happy that i had been put on the above medicines. he does not believe it is rheumatoid in nature, states that angioedema with lupus is rare! went to an allergist today and now he says that he has never seen angioedema with allergies and he has even worked at mayo clinic. i am 36 with 2 boys and a very supportive husband and family but i have to get more answers than i am getting now. what are your thoughts?