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Redbecca, did you try the two names listed here? I think you're going to have to travel. I'm with Jack-- this sounds like Wegs, not infection. Especially because after they lowered his Wegs drugs he developed a mysterious lung "infection" and heart involvement.
A list of top Wegener's hospitals and the doctor's in each are listed here: Best Hospitals for Wegener's
Not sure how far you are willilng to drive, but my daughter has GREAT doctors here in Orange County, CA. She was diagnosed at 15 and being treated at CHOC in Orange where she almost died because they knew so little about this disease. Her ENT got me in touch with a wonderful Pulminary doctor who in turn got me in touch with a wonderful Rheumy & they saved her life, she is now 20 and in remission for the past 3 years.
GOOD LUCK!!!
ENT - Dr. Robert del Junco - Orange, CA -St. Josephs
Pulm - Dr. Henri Colt & Tim Murgu- Orange, CA - UCI
Rheum - Dr. Desai - Orange, CA UCI
He MyerscoughtClan, that is wonderful you daughter is doing good. It's nice to hear when someone goes in remission.
Hey Redbecca
I got this message from someone that's currently having issues logging in but wanted to contribute:
Quote:
Please convey this message to Redbecca. Dr. Sharon Chung and UCSF is an excellent Doctor. She is the first of many many that diagnosed me with Wegener's.
I have only seen her once and am only on Pred.
Dr. Chung takes a lot of time and explains everything to you.
I am very pleased that I found her. The town of Chico is not that far from UCSF. If Redbecca can get her GP or ENT to make the appointment for her, they will get right in. Only took me one week after my ENT called.
Hope this helps.
Carol in CA
Hi Rebecca, did you finally find a Weg Dr. in the sac area? I have been seeing Dr. Paul J. Utz at Stanfords as a secondary. My primary has been Dr. Shapiro in the sac area. Him and Dr. Wiesner work together at Sacramento Rheumatology. Dr. Shapiro is very conventional. I was diagnosed with WG in April 2009, and on cytoxan and pred since then. However I am still on the Cytoxan as he is lowering the dose very slowly. I am only now on Cytoxan at 100mg from 133mg and hope to be off it by early next year. of course Imuran is the drug of choice for maintainance.
Flana, how come your Rheumatologist didn't switch you to imuran, cellcept, or methotrexate? Just curious. Are you off prednisone?
I'm sorry... I have to say that any doctor who would keep a patient on ctx that long does not know how to treat Wegs properly. That's not someone I'd refer a fellow Weggie to. Keeping a Weggie on ctx for over a year is far from the standard of care, so he isn't a conventional doc, but rather an ill-informed one.Quote:
Originally Posted by flana
I have to agree with Sangye 100%. I have a Wegs Specialist and he says he would not keep patients on ctx for more than 3 months unless absolutely neccessary.
I agree with the above. I believe best practice is to limit ctx to six months and extend to twelve in exceptional circumstances. It is a dangerous drug with the possibility of serious long term side effects that do not become apparent for many years to come. You need to get off it now or, if you are not stable, change medication.