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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 02:08 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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    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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    Hello! I am new to this thread... I have my trachea dilated about every 9 month for the past 4 years to help my breathing. Between the dilatations, I get a build up of mucus in my trachea that makes it hard to breathe and I have to cough to clear it. Does anyone else have this problem, and if so, is there anything that I can do to help it?
    Thanks

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    Welcome Chelsea B, glad you're here and asking questions...good on you! I haven't had my trach done, but to this day (3 1/2 yrs after initial dx/flare) I still get build up of mucous as my sinuses are pretty wiped out. There are many on here who have had you procedure done, and I'm sure they will respond to you. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Quote Originally Posted by ChelseaB View Post
    Hello! I am new to this thread... I have my trachea dilated about every 9 month for the past 4 years to help my breathing. Between the dilatations, I get a build up of mucus in my trachea that makes it hard to breathe and I have to cough to clear it. Does anyone else have this problem, and if so, is there anything that I can do to help it?
    Thanks
    Anyone have any experience with nebulizing to take care of this? Works for asthma and damage from wegs, but will it work for trachea mucus? Hmmmm?
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Default Re: Rituxan for airway involvment

    I have a buildup of mucus that eventually effects my voice causing hoarseness and I have to cough forcefully to expel the mucus. This happens between dilations. The mucus seems to come from just below the vocal chords, and my ENT cannot seem to fix the problem. Ive been on multiple antibiotics, and now an antifungal, and had several treatments with Rituximab a few years back, which seemed to really help. I guess it's time to re-visit the Rituximab again. The mucus always turns to a bloody, thick mess that becomes harder and harder to expel, and my throat starts to hurt and voice goes away. Last ENT visit a week ago, showed ulcerations on the vocal chords, which is a new symptom. I hope you are better soon.

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    Default Re: Rituxan for airway involvment

    Since being on Rituxan I have not had to have my windpipe stretched (3 to 4 times I had to have it done). I do have mucus/coughing in the mornings - usually I am able to take care of it within an hour of getting up. Talked to my ENT about the coughing- he said it was caused by the scaring from having the surgery. Can't complain - as long as I can breath. I have a new problem now - CLL. Took me off of Rituxan last year so I could start my chemo - I am worried about the complications from not being on Rituxan.

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