Hello All!

I'm having trouble finding my old thread!
My sister had her visit at JHU today! All I can say is WOW!! She saw Dr. Levine and his associate. In all these years of her suffering she has NEVER met doctors so knowledgeable and KIND. When we walked out of there today it was like a weight had been lifted!
Dr. Levine confirmed that my sister DOES NOT have Rheumatoid Arthritis. She does have Wegener's. She has been getting weekly injections to treat RA, and she does not even have it. Dr. Levine upped her Pred to 40mg (Oh God, I dread this!) and also upped her Methotrexate (I forgot the dosage) and I think he gave her Plaquenil. I'm not positive about the last one. I will find out tomorrow. He was so positive. He said that she should only need to be on high doses HOPEFULLY for a few months. Once the inflammation has gone down she will need to get the trache out. We set up another appt. for 1 month and she will be seeing the ENT surgeon (Dr. Kim?) and Dr. Levine on the same day. Dr. Levine also took pictures of her nose. He says that she really needs to get the nose surgery ASAP because her nose has completely caved in.
Although we're not exactly thrilled that she definatly has Wegener's we ARE thrilled that she is being treated properly by the BEST doctors!
It was a very expensive trip up there!
We left yesterday, got a room at the Clarion (very nice there) and between that, tolls, gas, food, parking...we spent over $300. But it was def worth every penny. We scheduled the next appointment for later in the day so that we would not have to stay overnight.
BIG Thanks and HUGS to Sangye and everyone else who encouraged me during this whole process of getting her into JHU! Words cannot explain how thankful I am, and I KNOW my sis is too!