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Thread: coughing

  1. #1
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    Default coughing

    Hi,
    I got RTX 2 months ago and there is an improvement in every thing (slowly) but not in coughing.
    In fact, my cough became worse.
    I went to see my lungs doc. he sent me to X-ray. nothing new with my lungs. the same old "stripes". (my lungs looks like a zebra). his nurse checked my respiratory functionning which were O.K. he said that maybe I cought some germ or virus and gave me Azenil. it was a disaster: I had so much diarhea and continued to cough.
    anyone has any suggestions ? meds ? Im afraid of more antibiotics. Roxo is the new option...
    can it be from the MTX ? from the RTX ? still from WG ?
    thanks.
    Last edited by Alysia; 05-28-2013 at 11:28 PM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Some of us have the kind of coughing that is just the result of stuff dripping down out of our sinuses and collecting in our bronchial tubes, where it eventually causes coughing. I can go for hours with no coughing and then I will start and it will sound pretty bad to others until I cough something up. And what I cough up is usually a very small amount of stuff. From what I've read on here, my sinuses are permanently damaged and will always produce excess mucus. So the cough will probably always be with me. It has gotten better over time, definitely, but I don't expect the mucus production or the cough to ever completely go away, even if I am in remission. I hope your cough has a simple explanation like this and is not something more serious. But I also hope, whatever the cause, that it gets better and goes away!

    That doesn't answer your question of why it would have gotten worse. I know so little about RTX, I cannot speculate there. I don't think MTX makes me cough. Possibly more old, thick mucus has built up in your sinuses and is causing more thin mucus production to try to flush it out. I am amazed at the chunks of stuff that sometimes come out of there with sinus rinses. And I always feel worse and cough more before "giving birth" to one. Doing more of the sinus rinses could help.
    Last edited by annekat; 05-29-2013 at 01:29 AM.
    Anne, dx'ed April 2011

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    I’m still coughing after the Rixutan infusions too. My scans came back and my pulmy said there’s nothing other than the usual mess my lungs look like. He says it can take 2-3 months to see the full effect of Rituxan working, but I had them in March and I can’t shake the cough. I thought I would have seen some improvement re: coughing, but mine hasn’t gotten worse like you. I did just have another infusion so maybe that’s part of the reason for me? My primary put me on antibiotics but that hasn’t worked and wants to try another one. As if I didn't have headaches already, looking through the packet I got when I started RTX and online, I see that coughing can be a side effect from RTX. Like you, I’m tired of antibiotics not working and don’t really want to try another. I might just wait it out and hope things improve soon. But I seem to be doing a lot of that and it hasn’t been a good thing for me to do. I just never know if it’s from WG, the meds, or something else. I guess the saying that doctors make the worst patients is true... Well, I typed this and realize it’s not very helpful, sorry. I blame it on the boredom of not taking classes this summer. If you find something that helps please share. Hope you feel better soon.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

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    Oh, Rebekah, I think all of our descriptions of what we are going through help others to some extent, whether we typed it out of boredom, idleness, or whatever...... good to hear from you in any case! And you will have more time now to study Wegs on your own in preparation for when you become a real Wegs doc!
    Anne, dx'ed April 2011

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    Is your cough a dry cough or is it productive? How long have you had it?
    Phil Berggren, dx 2003

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    Hi, thanks.
    the cough is dry. it is lasting for months. I was hoping RTX will help. in the last month the cough became worse. and walking is not helping with it as before

    I have "big" question: what are the symptoms that we have to live with and accept, and what are the symptoms that we dont have to live with, that there is a way to get rid of them and/or that they are an indication for flaring/ some deterioration... and how we can diffrentiate between them ?

    anyway, thanks for writing here. it helps. i love you.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Quote Originally Posted by Alysia View Post
    I have "big" question: what are the symptoms that we have to live with and accept, and what are the symptoms that we dont have to live with, that there is a way to get rid of them and/or that they are an indication for flaring/ some deterioration... and how we can diffrentiate between them ?
    I wish I had an answer to that....it seems very random to me. My cough does improve at some point, but my issues are with my airways and not the lung itself so I may not be a valid comparison.
    ~ Bob

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    Everyone is different, but it seems that the symptoms I will have to accept, whether I'm close to remission or not, are the coughing and obstructed airways from sinus drip, the production of excess mucus, and the fatigue and need to pace myself, maybe due to permanent reduction of lung function. In other words, these are the symptoms caused by permanent damage that will probably not be repaired by the body. Also, hearing loss and loss of sense of smell, though I still have hope for that last one.

    As to how we differentiate between the permanent and the fixable stuff, I think it is by experience, and by reading of others' experience on here.
    Anne, dx'ed April 2011

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    Mine's more of a productive cough... It is a little annoying, and has me paranoid of coughing up blood (thankfully I have not since my hospital stay in February though). But when I go out in public it's kinda nice because people stay away. Fewer germs for me, I guess. Just trying to find the bright side to all of this. Here's to hoping our coughs go away soon.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

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    Hi Alysia,
    Seeing as there is nothing new in your X-ray, how about looking at your surroundings, I find strong smelling washing powder can start me coughing, air fresheners, too much dairy, Pringle crisps are ldangerous, some of the strawberry crops are sprayed with anti-freeze, lettuce is sprayed 12 times before reaching the supermarket. I have found my system is super sensitive to all these things since treatment, so maybe take a look at what you are eating. I find Propolis throat spray great for calming things down and gallons of filtered water.

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