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Thread: Has anyone ever heard?

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    Default Has anyone ever heard?

    Has anyone ever heard or known someone who just has localized wegs in ENT area and it doesn't initiate anywhere else? Or has anyone heard of being in remission or comfortable state without immunosuppresant drugs? I guess what I am asking are there weggies out there who do not have kidney or lung involvement ever and just upper respiratory that is manageable?

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    Most people with Wegs don't have the serious kind with kidney and or lung involvement. Many Weg people do maintain a drug free remission, estimates run around 20% according to some research I have read. People with less severe "limited"Wegs are less likely to be on this forum it seems since they are probably busy with rather normal lives..
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by drz View Post
    People with less severe "limited"Wegs are less likely to be on this forum it seems since they are probably busy with rather normal lives..
    In that case... I hope you (everyone) stop posting soon.

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    I am one with "limited" GPA, localized to ears, sinuses and nasal passages. I believe I am in a solid drug induced remission, though my symptoms are highly variable and always annoying to some degree. I am almost off of prednisone, but expect to be on MTX for quite a while. So far, so good, in my case, with no hints of extension of disease to vital organs. I was diagnosed in early 2014.

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    Quote Originally Posted by Alaskatom View Post
    I am one with "limited" GPA, localized to ears, sinuses and nasal passages. I believe I am in a solid drug induced remission, though my symptoms are highly variable and always annoying to some degree. I am almost off of prednisone, but expect to be on MTX for quite a while. So far, so good, in my case, with no hints of extension of disease to vital organs. I was diagnosed in early 2014.
    I'd say you're fortunate but we all know you're not, it still stinks. Let's hope you maintain indefinately.

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    I had both. Most of my damage was in sinus area. Lungs were initially included, but healed well on their own as drugs were applied to slow the AI. I am now in drug free remission, 4 years later. I was nowhere near as bad as some, so maybe I was lucky in coming back relatively fast. I have retained remission for the summer so far as I went off MTX in July. All good so far! Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Scottgirl! My WG is mainly upper, no kidneys or lungs involved so far. Mine is basically my head area, my nose is saddled,my eyes are swallon, I can't smell or taste, I just ended up with upper jaw surgery and have 32 stitches in my upper mouth/ jaw area. I did have a mass on my lung they removed it and said it was nothing to do with the WG... I guess what I am saying is yes that it's not lung or kidney involved.

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    Just an aside, almost all pediatric Wegeners patients have kidney and/or lung involvement. It's much more rare in pediatrics to have it caught when it is "only" upper respiratory involvement, and here is one study if I remember correctly that shows that with a major flare it moves in pediatrics to lung and/or kidney.

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    I had smoldering sinus and ear involvement for a long time before diagnosis. It was thought to be just allergies and recurring sinus infection. The lung involvement came a couple years later, and I was diagnosed. If they'd caught it early and I'd been treated with the right meds, perhaps the lung involvement would have been prevented from taking hold. On the other hand, even with good treatment and medicated remission, involvement can start up again later with a relapse or flare, either in the same area of the body or in a different one. That's why we have to continue being monitored throughout our lives.
    Last edited by annekat; 09-19-2015 at 07:32 PM.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    I had smoldering sinus and ear involvement for a long time before diagnosis. It was thought to be just allergies and recurring sinus infection. The lung involvement came a couple years later, and I was diagnosed. If they'd caught it early and I'd been treated with the right meds, perhaps the lung involvement would have been prevented from taking hold. On the other hand, even with good treatment and medicated remission, involvement can start up again later with a relapse or flare, either in the same area of the body or in a different one. That's why we have to continue being monitored throughout our lives.
    Exactly how mine was started or discovered but I can trace it back to my cancer surgery somewhat!
    Nobody knows how we got to the top of the hill. But since were on the way down, we might as well enjoy the ride!
    James Taylor, Secret Of Life

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