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Shane
07-10-2012, 04:19 PM
Does anyone have any recomendations for Wegeners specialists in southern California? I am newly diagnosed and trying to navigate this whole thing. Any advice would be greatly appreciated.

Dirty Don
07-10-2012, 04:50 PM
Best of luck to you Shane. Many people on here with lots of experience & knowledge, willing to help. Closest I can answer your question is that I live in Phx and have great docs at Mayo Clinic specializing in and having a lot of experience with WG. As for SoCal, I would look into City of Hope???

Leslie
07-10-2012, 05:04 PM
Hello, I am wife to someone newly diagnosed with Wegener's. He is seeing Dr. Sydlo (sp?) a rheumatologist at Cedars Sinai Medical Group in Los Angeles. My husband is her 4th WG patient.
We have not yet sought out specialists at Mayo or Cleveland Clinic or other centers. My husband is 64 and is now on a regimen of Prednisone, Cytoxan and Coumadin.
I am interested in hearing about other specialists and treatment protocols.
Thanks!

Dirty Don
07-11-2012, 01:36 AM
Don't know anything about Cedars other than they have top notch people. The advantages of a Johns Hopkins, Mayo, Cleveland, and a few others is that they are self contained in all ways...they talk with each other, their diagnostic services are immediate, they are incredibly organized, and, for many of them, research is their main effort while practice is just that, they apply what they learn so their techniques, drug applications, etc. may be further along and more up to date than most places. Best of luck.

Al
07-11-2012, 03:14 AM
You might be at a good spot. I seem to remember hearing that Cedars-Sinai is starting a vasculitis center, but I do not know which doctors are involved. Probably it would be under the auspices of the rheumatology department.

Al

Shane
07-11-2012, 11:15 AM
Thank you everyone. I will look into Cedars for a specialist. I seem to have a pretty good Rheumatologist here but have been told that having a specialist would be a good thing. My doctors tell me they caught it early, no kidney involvment and only minor lung involvment, which has been cleared up. I am starting Rituxan this week and am a little concerned about the side effects. I am currently taking 50mg of prednisone everyday but am told that will be tapered as the Rituxan starts to take effect. Just trying to navigate my way through this thing. Thanks again to everyone for their input.

Lightwarrior
07-12-2012, 05:11 AM
Thank you everyone. I will look into Cedars for a specialist. I seem to have a pretty good Rheumatologist here but have been told that having a specialist would be a good thing. My doctors tell me they caught it early, no kidney involvment and only minor lung involvment, which has been cleared up. I am starting Rituxan this week and am a little concerned about the side effects. I am currently taking 50mg of prednisone everyday but am told that will be tapered as the Rituxan starts to take effect. Just trying to navigate my way through this thing. Thanks again to everyone for their input.

I also should look into Cedars Sinai, Cleveland Clinic and John Hopkins is not doable for me financially but it is only a four hour drive from my driveway to Disneyland. Soooo......... I should be able to make it trip wise, now I have to badger my insurance company to make this not out of zone.

Sangye
07-14-2012, 02:24 AM
You can call or email the Vasculitis Foundation to ask where specialists are located. A doctor who has only treated 4 Weggies is NOT a specialist. You need someone with much more experience. Also, just because a hospital is a fine institution doesn't mean they can handle Wegs. I learned that the hard way at Mayo in Arizona. They didn't have Wegs specialists when I was there.

mishb
07-14-2012, 08:30 PM
Maybe I should look up the address of some of these places whilst we are staying in Anaheim in November.
Couldn't hurt ....... for the what if's

Sangye
07-15-2012, 02:14 AM
Definitely, Michelle. If something happens and you wind up in the hospital it would help to have the names of doctors they might call for advice.

BarbW
06-07-2014, 03:11 PM
I am seeing Dr.Daniel J Wallace from Cedars Sinai.
He is THE lupus specialist and a vasculitis specialist.
I am really glad I got in to see him.

Russell Bro
02-19-2015, 05:37 AM
I was diagnosed and treated at UCLA. See the rheumatology department.

arjenks
05-24-2017, 03:49 PM
I was diagnosed and treated at UCLA. See the rheumatology department.

I'm newly diagnosed (first time poster) and will be visiting UCLA for treatment next week. The head of their fairly new Vaculitis program did her study at Mayo.

morningsunshine
05-31-2017, 06:36 AM
I've been dealing with this lovely condition for 3 years and am on RTX for maintenance. I relocated to NorCal from the East Coast and started seeing Dr. Goglin at the UCSF Vasculitis Clinic about 6 months ago. She is FANTASTIC and I wish I would've seen a vasculitis specialist from the beginning. UCSF may be too far of a commute for you, but in any case I'd recommend seeing a specialist, not just a rheumatologist with a few WG patients!

luan22
12-30-2017, 07:36 PM
I need to know the best Southern California hospital

PattyL
12-31-2017, 05:29 AM
I'm getting treatment from docs. at UCSD rheumatology,nephrology,and pulmonary.

whatthewhat
12-31-2017, 02:15 PM
My understanding is that Cedars Sinai is the best for adults in SoCal.

Poppy65
02-05-2018, 01:41 PM
Dr. Swamy Veneturapalli in Beverly Hills is very knowledgeable and is affiliated with Cedarís.


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