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  1. #1
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    Unhappy Tracheal stenosis and remission

    Can anyone tell me if they have achieved remission with WG when it effects the trach?
    The data I find online can be quite concerning and I would rather believe it is more attainable than not...call me self but I wanna see my kids grow up

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    LisaMarie - I honestly don't think that one affects the other. Both tracheal and subglottic stenosis do not tend to track disease progress. For instance, my inflammation results are now normal and my P3 are going down rapidly, but I am still reacquiring scar tissue around my subglottis (hopefully not too quickly). I feel fine.

    I think that whether you get into a medicated remission or non-medication remission you can expect to live a long time. As for your trachea, how you do with that probably largely depends on the skill and expertise of your surgeon as well as whether or not he is a WG expert and up on not only how to fix stenosis -- which occurs in other diseases and for other reasons -- but treating stenosis caused strictly by WG. I'll say what Sangye, Jack, Elephant and others all say, you need an expert -- this is my main symptom and I'm very fortunate to have one of the leading experts treat me. These a tricky, intense surgeries (so says my doc) where the risk of creating more damage (i.e. scar tissue) is very, very high. All this doc ever does is pound on me about how important it is to come to him if I even feel a tickle in my throat, and how he got to be so good just by seeing so many damned Weggies (it's his sole area of research).

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    I agree with Jan here.

    When I am in remission, I still have the subglottic stenosis (albeit a lot better). I feel fine too. Things will get better for you LisaMarie. x

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    Lisa Marie,

    Its attainable! Think Positive! I agree with Jan, One does not affect the other, stenosis comes on because of the WG, but is a symtpom all by itself. I know that no matter how good I get, I will always have the stenosis that I currently am afflicted with. But, I am happy becuase I can live a full life with what I have and the WG is under control. (for now)
    coffeelover

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    Thanks for the support...I hate the symptom ... I have other sites per the doc...so it was a blessing that the stenosis ..otherwise ...who knows when they would have found it....I get an echo on Tuesday to recheck my heart :...having irregular rate and chest pains...also came up with left lower lobe pnuemonia....see the WG doc on Friday..hopefully get some answers on a plan of care.....have a great 4th of July

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    Lower lobe pneumonia? How did they find that? Does it look like "atypical" pneumonia? Wegs lung involvement often gets labeled as pneumonia.

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    I don't know but my stepson Ryan has had about 8 teach surgeries was in remission went off prednisone and then it came beck now in his lungs as well. Has just had surgery on lungs.


    Sent from my iPhone using Tapatalk

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    Hi apologies firstly if this has been asked in the past but Im currently in remission with WG according to my dr but noted to my ent that at times when i do heavy exercise i wheeze a bit. He had a look and said yes looks like some stenosis. Questions
    1. Is it common to have stenosis even when in remission?
    2. Does it often get better, stay the same or worsen?
    3. Ent dr asked i increase my prednisone whereas immunologist said dont increase it...which one to go with?
    4. I dont have any inflammation or redness apparently so sounds like fibroblasts or scar tissue...is it a gradual thing?

    Sorry for all questions but im a little worried given everything else is good but my immunologist doesnt seem too concerned

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    It is not uncommon for stenosis from WG to happen even when in remission. I have had stenosis during remission. The good news is that it is usually fairly easy to fix. I have had dilation done maybe four times and I have had great results each time. It is not a real scary procedure either. I go home the same day- and can breath better right away.
    If it is scar tissue from WG I don't believe it can get better on its own.
    For me it has always been fairly gradual but I think I have heard of cases that progress fairly quickly.
    I don't think prednisone will have much effect on stenosis and even if it has some effect it is not a treatment. Stenosis will not stay improved from prednisone and of course you don't want to get stuck on higher doses of prednisone.
    If it were me and I wanted to test the effect of prednisone I might try it at a higher dose for a very short time and then reduce back down to baseline and see what the effects were. Of course I would run this by my doc before trying it.

    I think stenosis is one of the rare cases where treating the underlying disease has little to no effect on the secondary problem.

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    Yeah ok thanks for your response. So is it possible that it stays the same? Odd my immunologist responded that it is possible that it resolves on its own. Not sure how though.

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