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Thread: new member from Philadelphia with nasal crusting (aka: life of the party)

  1. #11
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    Quote Originally Posted by jesslove215 View Post
    Thanks so much for this! I tried the flooding technique and it was awesome. I do think the crust needs a little time to soften up before it will come out. I'm feeling better today than I have in awhile! Also, I just picked up lanolin last night from Target. It took me forever to find it... I guess I should have checked the breast feeding section first haha
    I am so glad you tried it Jess!! I think the flooding technique is the cause of the rapid changes to my sinuses these past two months. My ENT would agree with that too. Keep up the good fight, and eventually you will get ahead of the crusting!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  2. #12
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    Quote Originally Posted by pberggren1 View Post
    Michelle, I am in remission and always have bloody nose with crusting. And also have trouble breathing and can't do stairs. I have to disagree there. Just because one has these symptoms does not indicate active disease.

    And welcome Jess. Glad to hear you have Pete as your doc.

    Sorry Phil & Jess, I didn't know that.

    So this means that I could also be in remission with my bloody noses, my difficulty in climbing stairs and my aches and pains

    I will take that
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Definitely Michelle. I find most people do not understand the term remission.
    Phil Berggren, dx 2003

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    according to my doc (which is far from being a wg specialist, but still it makes sense) any blood is an indication to wg activity. maybe smoldering. but still something which needs attention and correct treatment.
    Dear Dr. Phil, with all respect , I think that blood is an "alert" sign....
    Last edited by Alysia; 04-20-2014 at 02:42 PM.
    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.

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    So, Phil, how do we understand the term "remission" ? I am confused. If there is bleeding and crusting, what is that if not disease activity? Is it just residual bleeding and crusting from all the damage done to the sinuses? Stuff that hasn't healed, despite no disease activity? Will it stop if the person is in remission long enough or cleans their sinuses well enough? Not challenging here, just asking because I do not know.
    Anne, dx'ed April 2011

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    Hi Alysia,

    I've told Dr. Merkel about the blood but I will talk with him again about it at my next visit. I think the way he sees it now is that my nose is just very raw on the inside from lots of abuse thanks to my Wegeners. The crust seems to be very very dry and if I try to blow it out without it being properly softened, it takes my nose tissue with it, resulting in scabs and nosebleeds. These scabs really haven't had a chance to heal because my nose is constantly being poked and prodded. I think that this will get better with the lanolin. Even just today it made a big difference. Saline gel wasn't really cutting it for me. It didn't seem to last long enough and coating my open nose wounds with salty gel was so painful because it burned. I think Mike's technique of flooding my nose will help me get the crust out without hurting the inside of my nose as much and the lanolin is definitely preventing my nose from drying out so quickly. I have a humidifier at home but my office is very dry. Dr. Merkel suggested I get a small humidifier for my desk but I haven't done it yet. I guess I've been avoiding all of the questions and odd looks that might come with a desk humidifier but maybe it's time to suck it up and get one.
    Last edited by jlove; 04-20-2014 at 03:21 PM.

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    the only thing that stopped my nose's bleeding and crusting (which lasted 4.5 years and caused a saddle nose), was the rtx.
    I find a correlation between nose "productions" and other wg-activity, like aching joints, ears, or even the anca test.
    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.

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    Quote Originally Posted by Alysia View Post
    according to my doc (which is far from being a wg specialist, but still it makes sense) any blood is an indication to wg activity. maybe smoldering. but still something which needs attention and correct treatment.
    Dear Dr. Phil, with all respect , I think that blood is an "alert" sign....
    Thankyou, my doctors also lead me to believe that this is the case.
    ........but hey, I will take remission - my husband and I both agree that this sounds good.

    Then my husband said - terrific, now stop the pred ........ummm, arggh
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Anne, at least in my case, I think the bleeding is stuff that hasn't healed inside my nose. I've also always had post nasal drip (I remember my doctors noting it quite a bit when I was a kid) and Dr. Merkel says my latest CT scan showed a polyp in my sinus but he said it was nothing we should act on (it might do more harm than good given the state of my nose and sinuses). I have noticed, since being diagnosed, that some people are "mucusy" people. My roommate is a healthy 24 year old man and he can produce a hearty phlegm rattle, especially in the morning. Also my dad and his sister both are tissue people. Lately, I've noticed that they blow their nose more than the "normal" person. This is what I do with my time, apparently.

    Last time I saw Dr. Merkel I asked him why he thought I had nose crusting even though he said he thought I had no active disease. I will try to repeat what he said as best as I can:

    Dr. Merkel: So say I took a wire brush and I jammed it up your nose a bunch. That would do some damage and it would hurt right?
    Me: Yes, yes it would.
    Dr. Merkel: So that's going to leave some scarring.
    Me: Yes, I would imagine
    Dr. Merkel: And where there's scarring there's mucus. And you have mucus you need to clean out. But you also have scabs. And you are disturbing your scabs with water and picking when you are trying to get out that mucus.
    Me: Sorry, scabs.

    Basically, Wegener's jammed a brush up my nose and left me to deal with the consequences.

    I do want to ask him about this again, though. He loves methotrexate for me. I don't have any joint or ear pain right now although every now and then my right ear will ring for maybe 30 seconds. This is a new development and I will be sure to share it with him. I don't know if it means much but I usually tell him every little thing I notice and see if he thinks they are problems.

  10. #20
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    how can we ever leave our precious pred ? impossible....
    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.

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