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Thread: Rituxan for airway involvment

  1. #11
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    Airway issues are not good and may not be WG related at all. Good luck.

  2. #12
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    I have had 4 trachea dilations and a flare is what causes my trachea to shrink more. Rtx has helped tremendously and I have not had issues with trachea since. Breathing is still not 100 percent of course because I have no cartilage due to WG but not having a flare since rtx and mtx for maintenance has kept it from getting worse. I wish the best!


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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"


  6. #16
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    I have tried a nebulizer but it doesn't work very well.

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    Quote Originally Posted by ChelseaB View Post
    I have tried a nebulizer but it doesn't work very well.
    When I had some bad mucus plugs in my lungs, my Rheumy prescribed acetylcysteine to put in the nebulizer. In addition to being a Tylenol overdose medication, it is a very good mucus buster! Might want to ask about it to your doctor. Maybe it might work for you too?
    MikeG-2012

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


  8. #18
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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.

  9. #19
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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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