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    Default Less Severe = Shorter Remissions

    So I was talking with Dr Villa Forte at my last appt, and expressing my annoyance at repeated flares. One thing she mentioned that I don't recall hearing before is that those who have less severe onset seem to have a harder time staying in remission. Kind of strange really, but seems ultimately fair given the less severe initial symptoms. Not sure that is a completely scientific thing and I'm sure there are those from both sides that run counter to this.

    Anyway wanted to share that as I found it interesting. At least in my case it seems to fit.
    ~ Bob

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    I believe there maybe some validity to that statement.
    Most treated vasculitis patients will experience renal failure within 2-3 years.
    So, if someone catches the disease early, they may still have issues until they reach renal failure if that is how far it gets.
    Not sure with Rituximab because it hasn't been used as long, so maybe this trend will change.

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    Are you talking about remission w/o drugs or drug sustained remission?
    - You can judge the character of a person by how they treat those who can do nothing for them.

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    Quote Originally Posted by Allisonquast View Post
    Are you talking about remission w/o drugs or drug sustained remission?
    Since the mortality rate of untreated MPA or GPA averages 5 months, I am referring to drug induced remission.

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    Wonder if this has anything to do with how agressively it's first treated. My symptoms are definitely less severe than a lot of wegs patients and they're not treating it very aggressively. I've wondered if this is a mistake and will make things worse in the years to come...
    "You don't have a soul. You are a soul. You have a body." C.S. Lewis

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    Quote Originally Posted by godgirl View Post
    Wonder if this has anything to do with how agressively it's first treated. My symptoms are definitely less severe than a lot of wegs patients and they're not treating it very aggressively. I've wondered if this is a mistake and will make things worse in the years to come...
    I was treated fairly aggressively, so I really don't think that is it. I couldn't begin to speculate why though.

    As far as the Renal failure, I'm going on 4 years now with no sign of any Kidney issues at all. My flares have all been pretty quickly treated though. I have to say I just wish they'd stop so I could stay at least on a low dose of Prednisone for a while.
    ~ Bob

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    My Weg expert at Mayo also mentioned once that cases limited to sinuses often have most flares and difficulty attaining and maintaining remission. And the most serous cases often seem to attain a better remission, maybe because the severe cases have to be treated very aggressively for person to survive.

    Quote Originally Posted by godgirl View Post
    Wonder if this has anything to do with how agressively it's first treated. My symptoms are definitely less severe than a lot of wegs patients and they're not treating it very aggressively. I've wondered if this is a mistake and will make things worse in the years to come...
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by mrtmeo View Post
    Since the mortality rate of untreated MPA or GPA averages 5 months, I am referring to drug induced remission.
    I guess what I meant was after the initial treatment maintenance or no maintenance.
    - You can judge the character of a person by how they treat those who can do nothing for them.

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    Quote Originally Posted by mrtmeo View Post
    Since the mortality rate of untreated MPA or GPA averages 5 months, I am referring to drug induced remission.
    This is another statement that I think makes no sense. A "mortality rate" would mean a percentage of people dying, not a length of time. Are you saying that without treatment, the average Weggie will die in 5 months? I went for 2.5 years without proper treatment and others have gone longer. If you mean when someone goes untreated for a major severe episode possibly requiring hospitalization, then maybe yes. I was treated for ear and sinus infections, and allergies, but not for Wegener's, during my undiagnosed period.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    This is another statement that I think makes no sense. A "mortality rate" would mean a percentage of people dying, not a length of time. Are you saying that without treatment, the average Weggie will die in 5 months? I went for 2.5 years without proper treatment and others have gone longer. If you mean when someone goes untreated for a major severe episode possibly requiring hospitalization, then maybe yes. I was treated for ear and sinus infections, and allergies, but not for Wegener's, during my undiagnosed period.

    Before there was effective treatment for Wegs most died within a few weeks or months after it was diagnosed. Most cases back then were probably NOT diagnosed too until there was massive kidney or lung involvement so life expectancy would then be very short without any effective treatment. Even now some people on here have died shortly after their diagnosis if it was delayed a long time and the damage was severe before any proper treatment was started. Their treatment may have been too little or come too late.

    After our initial treatment, if we survive and 90% or so do, then we are most likely going to die from an infection or other complications that results from our Weg damage to our body.
    Knowledge is power! Wisdom is using it to make good decisions!

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