User Tag List

Likes Likes:  5
Page 1 of 2 12 LastLast
Results 1 to 10 of 18

Thread: Southern California specialists?

  1. #1
    Join Date
    Jun 2012
    Posts
    4
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Southern California specialists?

    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.

  2. #2
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,761
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default

    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???

  3. #3
    Join Date
    Jul 2012
    Posts
    1
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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!

  4. #4
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,761
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.

  5. #5
    Join Date
    Oct 2011
    Location
    Pacific Northwest (USA)
    Posts
    1,851
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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

  6. #6
    Join Date
    Jun 2012
    Posts
    4
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.

  7. #7
    Join Date
    Jan 2010
    Location
    Yuma, Arizona 85364
    Posts
    952
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Shane View Post
    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.

  8. #8
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.

  9. #9
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,698
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    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
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  10. #10
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.

Page 1 of 2 12 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •