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Thread: Wegener's specialists in the southeast?

  1. #11
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    Hello this is Hakmans son and Nebs nephew! My name is Josh and I was supposively diagnosed with WG after being in the hospital for 2 weeks....I am wanting to go to the Cleveland Clinic....my question to any of you would be do I have to see Dr. Langford? Are the other Dr's there that come up under WG just as qualified? Do they all interact with eachother? Thanks for any response~

  2. #12
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    Hi Hakmanson, I sent you a message. Yes, I highly recommend Dr Carol Langford, you need a Wegeners specialist. You can also go under the Vasculitis Foundation and see a list of docs. My local doctor will call Dr Langford if we need her expertise. I see Dr Carol Lanford once a year.
    If you don't mind me asking what symtoms were you having and what meds are you taking?

  3. #13
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    I am seeing Funerio here in Greenville....Cytoxin, Prednison, Septra, Calcium, Iron, and Protonix....then there is some meds that help me sleep because I am UP and EATING all of the time!

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    That is normal, you are probably on 60 mg prednisone....I could not stop eating...but now I am down to 6 mg of prednisone and finally back to my normal weight! I didn't sleep either, only 1-2 hrs a night. I had to take a nap because I was a walking zombie!

  5. #15
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    100mg of pred and 150mg cytoxin

  6. #16
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    You really need a Wegs specialist. 100mg of pred is WAY too high a dose to stay on for longer than a few days (less than a week). The normal is to drop to 60mg and only stay there for a short time before dropping lower and lower.

  7. #17
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    Maybe its only until I see my Dr's that I am on that high of pred....They made appts for me while in hospital so I am just going when they told me to go

  8. #18
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    Hakmanson, that is high prednisone. They usually start off with 60mg, not 100mg. Can you see your local Rhuematologist sooner? Or mabey leave a message with the nurse re: prednisone?

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    I am going to try and see if I can get in with Rhuem here this week....they told me I was on the dose of pred because my kidneys had too much inflamation...neph dr told me this

  10. #20
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    Quote Originally Posted by Hakmanson View Post
    I am going to try and see if I can get in with Rhuem here this week....they told me I was on the dose of pred because my kidneys had too much inflamation...neph dr told me this
    High dosages of steroids are often used in inpatient care to try save organs or stop internal bleeding but then you are closely monitored. Is someone following you closely to see how you are doing so they can make changes if needed.

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