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Thread: Tracheal Stenosis

  1. #1
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    Default Tracheal Stenosis

    Hi All,
    I've been reading through past posts and was wondering about the tracheal stenosis?
    Several people have to deal with this problem.
    Is this something that comes along early in Wegener's or does it happen later, or at any time? I have a feeling this is something I have to look forward to.
    Also, I seem to suffer more aches and pain when the weather is damp. That is also when I become more sensitive to everything and get upset more easily.
    Do others feel this way too?
    Just trying to find my "normal"

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    Hi Terri,
    I'm learning that there aren't any definites when it comes to Wegs. Some people develop trach stenosis right away, others later, others never do.

    We can't even rely on statistics that much, since there's not much research done, and there are so many going uncounted or undiagnosed, etc....

    Though uncertainty usually drives me nuts, with Wegs it's the only thing we can be certain of! I try to use the uncertainty to my advantage-- to focus on what's happening right now, not what might happen. Otherwise, we'd be dying a million deaths, you know?
    Last edited by Sangye; 05-07-2009 at 10:08 AM.

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    Terri,

    My first and primary symptom was tracheal stenosis. I still wear a trach and have now for 6 months. Although I am hoping to get the trach out sometime this summer, I would rather be able to breathe and have come to the acceptance of having the trach. I waited far too long to be diagnosed.
    I was the same as you in that I had aches and pains (I called them traveling pains) and they were the worst during weather changes or
    when the weather was "damp". I went to see a rheuamtologist many years ago and he put me on a NSAID. For years, I took his advice and still suffered from these pains. Eventually, I got smart and sought out another rheumatologist and this time I found a good one. She, at that time diagnosed me with palendromic rheumatism and the symptoms of this disease were very similar to mine at the time. She put me a a maleria med called hydrcloriquine (sp?) and for 2 years I took that. This Hdroclor med helped make the pains that I was originally feeling go completely away, so when I started having breathing problems last spring, I never thought to consult with my rheumatologist. (I was only seeing her about once every 6-8 months as my "problem" seemed under control.....my choice, not hers)
    I have always suffered from allergies and I just ASS U ME d that it was a particualrily bad year and that I had maybe developed some seasonal alleriges as well. WELL, I could not have been more wrong! After MONTHS of not breathing and actually passing out at times from climbing stairs or a hill, I finally went to see my ENT who took immediate action. After my surgery I went to see my rheumatologist and she was angry with me for keeping this from her and immediately took the tests necessary to diagnose Wegeners.
    So that is my story. If you are experiencing breathing difficulty, go get help now!!!! I am not sure why you think you may end up with tracheal stenosis, but please do not mess with it. I now realize how serious my situation was. I know now that Wegeners diagnosis is difficult for even rheumatologist to see from the onset of symptoms. I think I have had symptoms slowly and in small increments for over 15 years before the stenosis made me get serious about a diagnosis. I am so grateful that my current rhuematologist was well aware of the disease and that my ENT's were both procactive in fixing my situation.
    I am currently feeling very good. I am on MXT and PRED and a host of allergy and other meds reaching towards remission. I now know that as good as I feel now, even with a trach still in, that I was in pretty bad shape last year at this time.
    What other symptoms do you have with WG? SAngye is very knowledgable in this disease and she is right in saying that the only thing that is a for sure with WG is that there is NO FOR SURE.
    Wishing you well. Any more tracheal stenosis question....ask...I consider myself an expert in that category.
    Lisa

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    Default fortunate so far

    Thanks for the replies.
    For sure, Sangye, I certainly don't want any new problems and not looking for any but I want to learn all I can from others about this disease.
    I've been fortunate as to not have what most people seem to be going through. I'm hoping it is because my W.G. was caught early and maybe the meds will keep it under control.
    I've had some trouble with breathing after physical activities,climbing stairs,etc.. but have contributed that to my weight gain.
    I have appt. tomorrow to have ct scan of chest to see if any nodules are lingering. Have had some wheezing, but then again, I like to think it is because of my weight gain.
    I'm taking 5 mg Prednisone, 100 mg Imuran and Bactrim 3x a wk.
    I'll report back after I know anything.

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    I hope everything goes well with your visit. Weight gain can sure cause a lot of problems! Being immune-suppressed, it's possible your wheezing might be due to seasonal allergies. It occurred to me today that might be contributing to my difficulties lately, too.

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    I also don't have a lot of problems directly from Wegs. Symptoms, yes, but not the extensive damage others on here have. I do have a lot of other complications that are rare and problematic. All this time I've been thinking I had a bad case of Wegs. Now my docs are saying the Wegs is behaving itself, but it's been a bad case of drug and disease fallout. Thank goodness for Wegs specialists. All my other docs were always acting like it was the Wegs.

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    I'm a little bit concerned that you're taking both Immuran and Bactrim together as I was told they often react when taken together.
    Just a thought but could it be a reaction between these two drugs causing your shortness of breath and wheezing?

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    Luce, where did you hear about the Imuran and Bactrim interaction? A doctor?

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    I was on cyclophosphamide and bactrim for 3 months when my doctor switched me to Imuran. When I get new drugs I always read the leaflets inside and co-trimoxazole (Bactrim/Septrin) was listed as something that may well react with the Imuran (azathioprine).
    So I phoned my doctor who advised me to stop taking the Bactrim whilst on Imuran, I wasn't given any substitute though.

    So I thought maybe Terri is encountering these two drugs reacting....

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    Bactrim is an odd drug-- interacts with everything, it seems. I see it all the time on my leaflets, too! I've asked my docs, and for the most part it just means they have to be aware, but it is possible to use it with the drug. I have no idea if that's true for Imuran, though, since I've never been on it.

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