Tests are normal

I just came from the rheumatologist and my blood work is normal. So she is going to take me off the plaquenil in April if those tests are still normal. So why do I feel so awful? Edema in entire body including my eyes, aching joints, very sore breasts, nausea, etc, etc. She says none of this is lupus because I am in remission. I do have fibro but this is the worst I've had in a while whatever it is.

My questions: When in remission can one still have flares? My blood tests were done a month ago. And oh yeah....I asked my hubby to go with me. She talked with him mostly!!!

My blood work was normal for many years while on prednisone and plaquenil, but I still had symptoms, just not as severe as before being treated. I was never told I was "in remission" just that the condition was "well controlled." It was never a question that my symptoms were still from SLE. And sure enough, after going off of prednisone, my blood work was once again abnormal.

Thank you, Ranin. I wrote the Lupus Foundation and she said there is no remission. She used the term well controlled also. She said that some doctors take people off their meds but then they start feeling worse. Others reduce the meds to see how they do, Basically what you and the Lupus Foundation told me is what I have been told by the doctors I had in IL. Today I had to see my pain management doc and he flat out told me that the Rheumie I am going to is horrible and that there aren't any decent ones in this city. He advised me to go to IU Med Center in Indianapolis or to try another group here that has some new doctors in the practice. At least now I know I am not crazy!!!

I have been fortunate to live in major metropolitan areas during the course of my treatment so I have been able to find good rheumatologists. I did not realize how lucky I was until I started visiting this forum and read the complaints of others. I hope you are able to find a great doctor soon.

I have been diagnosed 'in remission' before but it only meant that the disease was inactive or undetectable at that time. Autoimmune dz never goes away- it is something you have for a lifetime and remission only lasts as long as until your next flare