Little background: dx'd July 2013, 6 mo of cyclo, pred from 60 down to 10, and back up again, currently at 6; Rituxan in sept/October 2014 (2 doses/ 2 wks apart ). Saw dr. Villa forte for the first time August 2014 after finding a new lung nodule on chest X-ray. Have lung, kidney, sinus involvement all stable now. Currently on Imuran, 6mg pred, and bactrim.

I love my rheumy but was looking for a specialist opinion when I saw dr. Villa forte. Was very impressed with her, she's difficult to get a hold of, but I know she is incredibly busy. Have not been able to connect my local rheumy w/ her via phone, only communication has been my initial note completed at Cleveland clinic.

Wondering what others experience has been. I live in Washington state. How often should I follow up with her? I was expecting her to speak w/ my local rheumy (as in, make it a priority) is that unrealistic? Last time we spoke I asked what I should expect as I continue to wean of pred (should I be looking for specific symptoms). Her response was "you're responding well to meds, you shouldn't expect anything but to be healthy and happy." (I appreciate the positive, but looking for more direction.)

For those of us who have gone to see a specialist, how often do you follow up? In person? Via email or phine, etc.

TIA