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Thread: Sinus wg

  1. #31
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    I escaped saddle nose, I guess because I was diagnosed relatively quickly. During the first year there was some discussion of surgery to open up the scarred areas, putting stents in there, etc., but ultimately the doc said the benefit would probably be minimal.

    I was on a standard program of prednisone, followed by and combined with methotrexate, eventually tapering the prednisone to nothing over the course of many months. Rinsing with Budesonide to combat inflammation, and with Bactroban, were very effective, and I still rinse fairly regularly. I think just the passage of time has helped a lot too, i.e. since I have not had any active disease in a while my nose has had a chance to heal, even though there is some permanent damage and I have fluctuations in ear/nose symptoms, as well as minor side effects from medications. In my case, methotrexate was effective in bringing about remission, and I've had no serious flares, so I know I'm lucky.

    There are many ups and downs with this, as you know, so hang in there.

  2. #32
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    oh wow your so lucky you didn't get saddle nose! I'm excited to know you went in remission with methotextrate i feel like not to many patients are on that. I'm on 20mg methotextrate and 2.5mg prednisone. so I'm finally down on prednisone. i take my blood tests this week so I'm anxious to see my results bc its been since november! I've been feeling really good other than being exhausted I've been trying to stay active i only don't feel good when i have a lot of bacteria in my nose and i can feel when its in there. how long did it take of treatment before you hit remission?

  3. #33
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    Welcome to the forum Lauren.
    If I understand correctly you are dealing with 2 different issues: the staph that they have found in the culture and wg. That staph is something like mrsa, if I am not wrong, and you must get a decent antibiotic treatment for it. Try to find an infectious diseases dr.
    As for wg, ditto for what all the others above wrote.
    I think that when your nose's "productions" are bloody, its more about wg. Other colors might be the infection.
    We had that great thread to compare what we got out of our noses: http://www.wegeners-granulomatosis.c...afe-lunch.html
    I had bloody noses plus crusts etc. For about 4 and half years. My nose became saddle. Only rtx stopped it. No more bloody noses now. Although sometimes I think that there was nothing left there to create "productions"...
    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.

  4. #34
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    Quote Originally Posted by LaurenGoodwin View Post
    is it absolutely disgusting to share pictures in my profile of some of the pictures i took of crust that comes out of my nose during debridements? ha
    There is an older thread somewhere here filled with some graphic pix of trophy boogers so you could find that and add to it.

    Bloody crusts were one on my first symptoms of Wegs. I saw ENT doctor for years for this but got no help from them. It only got better after getting Wegs diagnosed and treated. If I rinse daily, sometimes more, I generally have no bloody crusting anymore and rarely have fresh blood in the the rinses. When it does show up I use some Flonase nasal spray for a few days and it seems to heal up or disappear.

    I use the SinusePulse machine most of the time since it can adjust the flow pressure but I often also use the squeeze bottle for a quick rinse too. The Sinus Pulse is the second generation rinse machine that was an improved version of the original Water Pik rinse machine.

    I think it is helpful to get rid of the mucous crusts or clogs before they dry on too hard and then cause bleeding when they are dislodged. Some times this can require a lot of rinsing to dissolve them or loosen them enough to wash them out. Other wise if they are picked off or blown out when dry they can cause bleeding that may result in bloody crusts. I recently had a bloody nose when I blew my nose too hard and this happened to me.

    Alkalol nasal rinse can also be useful for nasal rinsing and yields a nice cool refreshing feeling. They also claim it can help by dissolving mucous and reducing irritation to help reduce congestion. It is available at most drug stores or for sale on the internet.
    Last edited by drz; 03-12-2017 at 05:37 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  5. #35
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    Quote Originally Posted by LaurenGoodwin View Post
    is it absolutely disgusting to share pictures in my profile of some of the pictures i took of crust that comes out of my nose during debridements? ha
    People have done it, there is a whole thread on it that I think someone shared the link to. You could add to that or start your own. Just include a warning so no one will have to look at the pics who doesn't want to. I already know what the crap looks like, so didn't look at that thread, but I heard there were some doozies.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  6. #36
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    I have been tested for MRSA and it came back negative. that was actually the first test i ever did bc i didn't know what was going on with me. I have also gone to a infectious disease doctor and he sent me back to my ENT bc there was nothing really out of the "ordinary" the bacteria in my nose is staph which is a normal bacteria that grows in your nose. my problem is that i have an overgrowth of it. as in it grows really quickly. the doctor said the inflammation is causing it to do that? and once the inflammation goes down so will the bacteria?

    haha thanks guys i might just have to check out that page to see if theres looks like mine.

    I'm starting with my rinses at night and flonase so it should be better.

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