Question: I am in my 30s and have undifferentiated connective tissue disease (likely lupus). In addition to the typical flares, for the past 3 years, I have gotten flares that consist of extreme lightheadedness, presyncope (never passed out), vision going black for several seconds, head feeling swollen, mental confusion, feeling like I'm in a stupor, lightheadedness in my dreams and sleep, indescribable exhaustion, and headaches. My brain MRI (without contrast from 1 year ago was negative but they were looking for MS and sx have since worsened.) Autonomic testing (tilt table and sweat test) were also negative. ACTH and cortisol levels normal. Prednisone always resolves the symptoms. My rheumatolgist does not know WHY or the cause of these sx. Some general inflammation not showing up in my labs ? However, because the prednisone resolved my sx, my rheumatologist started me on methotrexate hoping I could get off prednisone. It worked & I tapered off prednisone easiy and virtually sx free for 10 months until I got a virus. Now I'm on 20 mg prednisone and had to even go up to 40 mg a few days. Sx return on 15 mg. Now tapering even slower and my methotrexate dose was increased. Any idea what could be going on or causing these sx? They are really hampering my life. But I'm currently okay on 20 mg prednisone/day.

Thank you for your response. One of my docs tried me on fludrocortisone to see if that would work but it didnt help at all. I felt worse on that. I also had adrenal glands tested through endocrinology and they were functioning normally. My sx all started BEFORE I ever started taking any prednisone and I was never on it all that long to ever be dependent on steroids. My rheumatologist (as well as previous doctor) suspect my antibodies are affected my central nervous system. What do you think? thank you

Thank you so much for your thoughtful response and input. My ANA titer was most recently 1:640. It has been postive for atleast 10 years and has been that high before in the past. I tested negative for the specific antibody tests. I have leukopenia from time to time and but most my other labs are negative as far as I can remember. During my other flares, I get pleuritic chest pain, joint pain, muscle pain, and butterfly rash. I have sicca syndrome and Raynauds. I have chronic GI issues and interstitial cystitis. Strange add to the mix, about 15 yrs ago, I developed TERRIBLE thirst and constant urination. I tested positive for idiopathic partial central diabetes insipidus about 15 years ago (had TERRIBLE sx and needed DDAVP for 2 years. It gradually resolved spontaneously and never came back (no longer needed tx). That is a mystery but occured when I was at a low body weight due stomach issues. Not sure if that is related. Thank you.