Wegener's specialists in the southeast?

[jenjenn711]

Hi! My dad was diagnosed with Wegener's a few years ago and has been in remission for a long time. Now, though, he has developed some persistent respiratory issues and we are pretty much certain this is a relapse. He went to the doctor today and they did bloodwork and a chest x-ray, and we'll know more later, but for now the doctor has put him back on his meds. When he was initially diagnosed we could not convince the doctor there was more wrong than just a "sinus infection" and after multiple rounds of antibiotics, he finally ended up in the ICU (with vasculitis, kidney failure, etc) and nearly died before someone recognized what he had as Wegener's.

Sorry to ramble. The point is, this time around we want to be sure his doctor is really knowledgeable about this disease. We are in South Carolina. He is seeing a rheumatologist and we are hopeful that he is going to take good care of my dad. But for those of you in the southeast, who do you see? Who would you never consider going back to? Do most of you see rheumatologists for Wegener's or is there another type of doctor that is better? Any input would be much appreciated. I am going to try to talk my dad into joining this group but he is really not into doing things online.

Thanks!

Jenny

[elephant]

Hi Jenny I live around Greenville South Carolina and I drive to the Cleveland Clinic to see Dr Carol Langford ( wegeners specialist). She is great. First I started at MUSC, but they did not see that many wegeners patients and I felt that I was not getting proper treatment. I do see a really good local Rhuemy in Greenville,SC . If there is anyway I can help let me know. Sorry to hear that about your dad. Be persistant about getting a Rhuemy to see your dad at the hosptial or have the doctor call any of the Rhuematologis who specializes in wegeners. Under the Vasculits Foundation.

[Sangye]

Hi Jenny, glad you found our group! Even if your dad doesn't join in, you can help him a lot by participating.

Your dad definitely needs a Wegs specialist (a rheumy who sees hundreds of people with Wegs). There are a couple different ways to do it:
1) Travel to a vasculitis center and be treated directly by a Wegs doc. The Wegs doc can work with a local rheumy to care for you. This usually involves traveling quarterly until the disease is under control, and then only once or twice a year. This is what Elephant does. It's the best option, because you're able to talk with the Wegs doc directly.

or 2) Find the best local rheumy you can and have him/her consult with a VF doc regularly. This is much better than nothing, but the downside is you have no direct contact with the Wegs doc. You can't ask questions and they don't see you in person. It's not ideal. This option only works if your local rheumy is able to subjugate his/her ego and let the Wegs doc oversee your care.

The vasculitis centers in the US are: Cleveland Clinic, Johns Hopkins (Baltimore), Boston University, Mayo (Rochester)

[wgrebel]

Dr Stephen Capizzi, MD is a Vasculitis Foundation Consultant and Wegener's specialist in Nashville, TN. The phone number is 615-284-5098 & the address is:

Mid State Pulmonary Associates
300 20th Avenue North, Ste 503
Nashville, TN 37203

He has been wonderful to me. He is an honest, straighforward doctor. You can go to the vasculitis foundation website and get his info also. He answers calls on the weekends & his office will get back to you. I see Dr. Capizzi every two months (April/June/August/October/December) & I see my rheumatologist (March/May/July/September/November) this year and I will continue this round of treatment in 2011. I hope this helps.

[nebs]

Hi Jenny I live around Greenville South Carolina and I drive to the Cleveland Clinic to see Dr Carol Langford ( wegeners specialist). She is great. First I started at MUSC, but they did not see that many wegeners patients and I felt that I was not getting proper treatment. I do see a really good local Rhuemy in Greenville,SC . If there is anyway I can help let me know. Sorry to hear that about your dad. Be persistant about getting a Rhuemy to see your dad at the hosptial or have the doctor call any of the Rhuematologis who specializes in wegeners. Under the Vasculits Foundation.

I may have replied to your message already (I'm having trouble maneuvering)! My nephew lives in Greenville, SC and was just diagnosed with WG. He wants to get a 2nd opinion from a specialist. Did you try anyone nearer to you before going to Cleveland? Also who is the Rheumatologist you like there in Greenville? I live in Cleveland so Dr. Langford may be an option if he can leave his job to get up here. Any other useful info would be appreciated, thanks!

[JanW]

To just add to Sangye's list (although I know this isn't the Southeast) -- University of Utah and Cedars Sinai (LA) are now establishing vasculitis centers as well. I know Utah's is up and running -- not sure about CS.

They've also added some new specialists on the VF website since this last time I've been on -- including the guy down the hall from my rheumy, so that's good news.

[Hakman]

My son had just been diagnosed. He lives in Greenville. How could he contact you?

Hi Jenny I live around Greenville South Carolina and I drive to the Cleveland Clinic to see Dr Carol Langford ( wegeners specialist). She is great. First I started at MUSC, but they did not see that many wegeners patients and I felt that I was not getting proper treatment. I do see a really good local Rhuemy in Greenville,SC . If there is anyway I can help let me know. Sorry to hear that about your dad. Be persistant about getting a Rhuemy to see your dad at the hosptial or have the doctor call any of the Rhuematologis who specializes in wegeners. Under the Vasculits Foundation.

[elephant]

How old is your son? If he is younger than 17 years old then he has to see a pediatric Rheumatologist. I think there is one down in Charleston,SC at MUSC. Is he seeing a Rhuematoligst here in Greenville,SC?

[Hakman]

He is 30. He started his meds last Friday. His general doctor recommended MUSC because of Rheumatology, but she was open to sending him anywhere. We believe he should go to a Weg specialist. My sister lives in Cleveland so we got him an appointment at Clev Clinic next Friday. My number is 404.512.9490 and would enjoy speaking to you about your journey. He did not like the Rhem doc they assigned while he was at Greenville Memorial last week, so he has another at the recommendation of his gen doc, Doc Green. Thank you

[Jack]

Hi Hakman, hope you don't mind me mentioning, but I think you should edit out your phone number and issue it using the Private Messaging system. There are some funny people about on the internet and some probably even read these pages!