PDA

View Full Version : WG specialist in Nashville, Tn?



Victoria
06-22-2010, 11:58 AM
Does anyone know a wg specialist in or near Nashville, Tn?

renidrag
06-22-2010, 10:03 PM
go to www.vasculitisfoundation.org (http://www.vasculitisfoundation.org) They have a list of specialists throughout the country. I'm not sure about Tennessee but I do know the Cleveland Clinic is famous for treating Wg. Have you been diagnosed? Please tell us your story as there a lot of people here to help and listen. Sangye will be in contact soon I'm sure.
Dale

Victoria
06-25-2010, 12:42 PM
Thanks. I only found this forum two weeks ago. Yes, my husband is a wg pt. who was diagnosed in 1985. He was already in kidney failure when finally dx'd. Treated by a very good rheumatologist in Nashville, Tn. at Vanderbilt teaching hospital. He had cytoxin first once a mo for 6 mo, got off then a few mo later more. Not sure of all facts except what he has told me. We have only been married 10 years. Wonderful man. At that point in time he came off all meds until a relapse in 1994. The same dr. started him on methotrexate with the prednisone and all the other stuff. This episode was in lungs. Stayed on those meds till another flare in 2007, in lungs and kidneys both. The doc that had treated him all those years passed away and we were trying to find one that was educated on wg. Hard to do. The reason this episode was so bad a dr. he had been referred to took him off all meds! Why I never understood. He was supposedly a specialist from the Mayo. Well, within a mo the symptoms began. Low grade fever, sinus problems, voice could barely be heard above a whisper. After tests began it was determined to be in both lungs and kidneys. Found a good kidney specialist at Vanderbilt in Nashville, got him back in remission. Replaced the methotrexate with myfortic, of course hi dose prednisone etc. Stayed good until this past month. Same symptoms started all over. We just spent the entire day at Vanderbilt with kidney specialist and ENT that looked at his vocal cords. Waiting on tests. He is back on 80 mg prednisone. That's highest he's ever been started on. His voice is barely a whisper. Does anyone have experience with that? I'm just amazed at all the stories I've read about other's experience with this disease. I had never heard of it until 10 years ago. Any input appreciated.

Sangye
06-25-2010, 11:05 PM
Hi Victoria, like Dale said the best thing is to get to a major vasculitis center to see a Wegs specialist. It may be that the Mayo doc took him off meds because he looked stable. The drugs are highly toxic and damaging. Prednisone is particularly dangerous to stay on long-term. Wegs is tricky. Even the Wegs docs often have trouble knowing for sure if it's safe to take a patient off the meds and how to differentiate subtle signs of disease activity from damage due to the disease/ drugs. Many times it's trial and error.

Vanderbilt is of course a great hospital, but they aren't Wegs specialists. Each time I see my Wegs doc at Johns Hopkins, I'm reminded of how important it is to have a Wegs specialist and to see one in person versus just having one consult with your local doc. On Wednesday, Dr Seo walked in the room, took one look at me and before I said anything, he said "I know exactly what happened and how to fix it." He then offered tons of information about my case, Wegs in general and ongoing research-- all derived from seeing hundreds of patients with Wegs. There were a number of times I asked "How do you know that?" and he'd say, "Because I see it all day every day."

You don't bring a Porsche to a mechanic who's only worked on motorcycles, even if s/he is the world's expert on motorcycles. Please get your husband to the proper facility as soon as you can.

wgrebel
07-25-2010, 06:54 AM
Stephen Capizzi, MD is listed on the Vasculitis Foundation Website as a consultant and knows alot about WG. He manages my care and is in Nashville, TN.