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Thread: Weg, deviated septum and surgery recom'd by local MD

  1. #11
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    Thanks for all of your suggestions and experience on this subject. I think the daughter has decided that she needs the local ENT right now, even though it is obvious he is not a Weg expert. She has said she will tell him she respects his experience and opinion, and she does not mean to be non-compliant regarding his recommendation to correct the deviation in the septum (his opinion is that the deviation is creating an architectural host for pathogens, which is likely true...our concern is that with active Weg, her septum may not survive the surgery).

    Her short term, immediate need is for conservative efforts to rid her of current infection so she can get her Rituxan infusion. Once she achieves a medically induced remission, she can re-visit his and expert suggestions to do surgery on the septum.

    She and I both agree that he would not be the one to do the surgery, and she would either go to Mayo or consult with Lebovic, but that might allow her to mend her current acute problem in state, in a timely manner, rule out fungal sinusitis and get the Rituxan infusion to avoid further head ache and complications. Man, the machinations one must go through, when you feel you know more about your condition than one of your docs!!!

    Does this sound reasonable?

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    This sounds reasonalbe to me. But I had rtx while I still had this lung infection.
    Phil Berggren, dx 2003

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    Default Sinus involvement and treatment

    I'm always surfing, and found this article comparing the the two most recent large studies of RTX.....there is simply not much literature regarding ENT involvement and Weg:

    Rituximab in ANCA-associated vasculitis: a revolution?


    " During the 15th ANCA Workshop, the Cambridge group reported their experience with protocolized re-treatment of rituximab [22]. When rituximab was given every 6 months (1 g after initial dose of 2 × 1 g), 22% (11 of 49 patients) relapsed. In the study by Niles et al. [23], continuous B-cell depletion with rituximab every 4 months was used resulting in only nine relapses in 72 patients. Although these studies are all rather small, they point out that maintenance therapy with rituximab may be an option to control the disease. Another interesting approach has been used in the Mayo Clinics where timing of re-treatment with rituximab was based on B-cell counts and ANCA levels. Pre-emptive therapy of rituximab resulted in persistence of remission in all their patients (N = 138 courses of rituximab) [24]."

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    Quote Originally Posted by pberggren1 View Post
    This sounds reasonalbe to me. But I had rtx while I still had this lung infection.
    So Phil, your docs treated you with RTX while you had a lung infection? What type of infection (bacterial/fungal/viral?) I hope it is better my man.

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    It is a very rare and deadly bacterial infection called Mycobacterium Abscessus Lung Disease.
    Phil Berggren, dx 2003

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    Wow Phil,

    I wish you much luck in punching through this condition. A mycobacterial pneumonia is a nasty bugger....are you still on antibiotics? It appears that many Weggies are either fighting to get into medical remission and then fight subsequent infection all at the same time.

    I will keep the group posted as per Alison's progress. Best wishes to you and to all!

    Jane

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    Thanks Jane.

    I am off all antibiotic now. I have been since early August 19.

    Yes, most Weggies either fight the disease or infections or both. All Wegs specialists have told me that infections are what most Weggies have to deal with the most.
    Phil Berggren, dx 2003

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