Duke visit and Richmond Virginia

Hi everyone wanted to share my Duke visit with Dr Jay Doss. He was amazing and answered a lot of questions my first Rhumy could not. He was ok with methotrexate but said another drug did a little better in clinical trials. So I’m on the road to take it for the next 1.5 years. Oddly just as I was leaving to go to Duke my Dermatologist called me she had found a VCU medical center Md that is seeing Wegners patients. Beth Rubinstein . I have an appointment with her in September. I figure if things go side ways she could better handle it in a university setting. I’m curious if anyone else out there has wegs in the eyes/sinus and how you are doing.

take care

Brad

Sinus damage from GPA is very common. GPA can attack the eyes and scleritis is common along with inflammation of eye lids but more serious attacks can also cause loss of vision so prompt assessment and treatment is recommended.

I have been really pleased with Duke too. Did they start you on Bactrim?
Wegs sinus is brutal. A few things I have learned that help- a Sinu Pulse machine, Flonase, generic or regular Mucinex. I only had eye blood clots once. An increase in prednisone put that to an end.
The other problem caused the first year was the loss of teeth. With medication many of these things work themselves out.
Masha