Hello & welcome,
I am sprry to be reading all that you have been through.
It sound slike they are running all the tests and giving you treatment, but perhaps the Drs are not getting the *right meds* in you.
Menaing a combo of drugs, or the milligrams of meds needed to help you out.
Please call him back, tell them you are getting no relief with what you are doing daily right now.
Be sure to mention you have small children so they can understand not to be giving you too much of a sleepy side effect medicine.
Here is our more active board
www.LupusMCTD.ning.comThis is where most active users post now if you'd like to come over there.
Gentle Hugs,
Kathy