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Thread: how many of us have saddle nose ?

  1. #71
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    Also no saddle nose here yet. I have basically only sinus involvement, diagnosed Oct '13 and still on Mtx and 10mg preds at the moment. Still have sinus issues like crustiness and bleeding sometimes, so i'm keeping my fingers crossed...

  2. #72
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    I'm trying to figure out what's going on with my nose and thought maybe those of you here with more nose and sinus history could help... I am having more pain in my nose and it feels very dry, not a lot of secretions or gunk coming out when I rinse. (Just some crustiness which is normal for me. No bleeding.) I've had nose troubles for many years before diagnosis and treatment, and the ENT recently said my nose was looking better. So the pain is puzzling. Labs are decent. Any insights welcome. Thanks!

    a less pressing but equally intriguing question, why does autocorrect keep trying to change nose to Jose? Is Siri suggesting a name for my schnozz?
    Last edited by LisaT; 07-14-2014 at 02:16 PM. Reason: Typo
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  3. #73
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    Hi Lisa, it could be because of vasculites

  4. #74
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    I was going to say "check your humidity", but then I saw that you lived in Delta, so I have no clue. As an aside.... Beautiful part of the world you live in. Vancouver is one of the nicest cities in the world. Unless the winds changed or it got real hot and dropped the humidity to less than 25% like we routinely have, then hard to say.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  5. #75
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    Quote Originally Posted by vdub View Post
    I was going to say "check your humidity", but then I saw that you lived in Delta, so I have no clue. As an aside.... Beautiful part of the world you live in. Vancouver is one of the nicest cities in the world. Unless the winds changed or it got real hot and dropped the humidity to less than 25% like we routinely have, then hard to say.
    It has been really hot, I don't know what the humidity is but it's usually not too dry here. Yes, I live where I live. Aside from the astronomical cost of housing, which is because it's such a beautiful place to live! And has milder weather than the rest of Canada.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  6. #76
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    I have saddle nose also... just makes me look like an old cowboy. I'm getting use to it, - kinda!
    Last edited by RussW; 07-14-2014 at 05:49 PM.

  7. #77
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    My ENT told me because of all the damage caused in my sinuses before diagnoses, it will never be normal again. So he reasons that I will always have a little (?) pain and "issues going on" up in my nose. Rinsing does help a lot though...

  8. #78
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    counting so far: 14 don't have it. 11 have it.
    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.

  9. #79
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    Quote Originally Posted by Sukriti View Post
    Hi, I've been diagnosed with Weigners four surgeries down after being sick for nearly a year. And got a saddle nose. How long does the disease take to go into remission? I live in New Delhi, India.
    Hi and welcome to our weggie family
    there are at least 2 others here from india. I hope you can get in touch with them.
    considering your question about getting into remission it depends on many factors, so I can't tell exactly. buy I hope that you will be there soon.
    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.

  10. #80
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    Hi. Probably a little late.
    I also have saddle nose. When it happened it was so sudden I was shocked.
    My normal dr asked me if I had broken my nose. It happened in the week I was hospitalised nearly blind and the specialists were carrying out all types of tests and biopsies. An ent dr drove a rod with a camera up both nostrils into the sinus area (without any anesthetics). I seriously though he broke my nose.
    Much later I was told it was damage caused by wegeners.

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