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Thread: Rituxan for airway involvment

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    Default Rituxan for airway involvment

    If uve read any of my previous post,you know i am currently having a flare in my airways. Thru the years ive been sick ive only had airway involvement for the past 4 years. Only had 1 surgery. 2 flares treated with pred which is what im currently on. My wegs has been treated with cytoxen at first...and then imuran for 7 years and then we added methotrexate because my joint pain kept reacurring. So as of 2006 ive taken imuran and methotrexate and only use pred during flares. i just had a very long conversation with my old dr. She saw i was seen in her clinic so just called to check on me. (how sweet) WE talked 45 min. Never in all my sickness has that happened. Anyway i was asking her how she feels about whether or not ive ever really reached full remission...feel like a sputtering volcano. so she brought up rituxan. She said she doesnt know what it does for airway involvement. So ive come to the experts for advice

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    prednisone alone for flares is not enough - it will hide the symptoms but not address the problem. Rituxan should help bring you into remission - but your best bet is to consult with one of the vasculitis experts, and have your doc coordinate care in consultation with them. For tracheal stenosis specifically, Dr Robert Lebovics in NYC has years of experience with surgery for GPA patients and you might try to check with him as well.

    Good luck.

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    My dr told me yesterday that she is friends with dr ville forte at cleveland clinic and is going to consult with her on the issue...that makes me feel much better. I still want to hear anyones experience with it. Thanks!
    Last edited by im so blessed; 01-06-2015 at 03:08 AM.

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    Hi, It will depend on which kind of stenosis you are experiencing. One is swelling, granulation etc this one will respond well to medication. The other is scar tissue which keeps growing, this has to be removed surgically repetitively. My experience with Rituxan has been positive in getting WG back in it box.

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    I experienced swallowing problems that have recently been diagnosed as an esophageal web. Any one has knowledge of a connection to WG?
    I am a strong person, but every now and then I also need someone to take my hand & say everything will be alright....

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    Had to have my windpipe stretched 3 times - since being on rituxin it has taken care of the probelm. Still see my ENT but for 3 years now everything has been fine.

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    Meredith-was that a problem due to breathing or swallowing?
    I am a strong person, but every now and then I also need someone to take my hand & say everything will be alright....

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    Breathing - can be scary. Just went to my ENT he said things look pretty good, some scaring still showing. I have a close relationship with him because of all my problems even hugged me on Friday. Very important to keep a watch on it we are trying to take care of it before a breathing problem occurs. I was told the only time predisone would help with Wegs is if it was done by IV, pill form takes days to kick in. Presdisone never helped me with the breathing problem. Epinephrine is the only thing that will open my airways - have to go to the ER to take it.

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    When I was diagnosed in 09 after months and months of sore joints, aching feet and such, after my first Prednisone pill on a Friday night (80mgs) got up Saturday morning and washed and waxed my truck, pain free for the first time in years, too bad it doesn't last . I think tapering the prednisone to a level we can live with is where most people end up.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    A Good doctor will always consult with another doctor!! A Specialist! But you should be seeing a Rhuematolgist for what you have! And you should be on Retuxan by now!
    My kidney doctor did plasmapheresis on me and gave me Cytoxan which I stayed in the hospital for 4 weeks.. My kidney's were at 9% shutting down.. But then I kept getting sick and the Cytoxan wasn't working by the time I left the hospital in February my Rheumy doctor got me approved for Retuxan.. Once on that it took 3 more months for remission. But it is Highly recommended for us.. Cleveland Clinic and Mayo brag about it...look it up...
    good luck..

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