I have yet to talk to anyone who has this. It is a very rare autoimmune disease. I am seeing a Rheumatologist and I am the second case he has treated in his entire career. Early on I tried to find another doctor to get a second opinion but I was turned away by every doctor I called. Please reply if you have it or know someone who does. I have been doing research and searching the internet on this awful disease and learning about it with my doctor.