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Thread: Less Severe = Shorter Remissions

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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

    http://www.sensinganenemy.com

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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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    I'm told that in cases of "limited" GPA, flares are mostly limited to the original site(s) of trouble, e.g. nose and ears, and usually respond well to the original treatment. This is one of those disorders where the treatment can be worse than the disease, so the trick for you and your docs is to strike the right balance.

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    Hi Bob,
    What was your creatinine when your kidneys were at their worst?
    What is your creatinine now?

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    Quote Originally Posted by mrtmeo View Post
    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.
    I do not understand this statement. Or did you mean "untreated" vasculitis patients. Either way, I don't think it makes sense. It certainly is not a trend among our forum members. I think I would know if most of us were reaching renal failure within 2-3 years. Many of us have gone much longer than that without any kidney issues, let alone failure. Even many of us who went undiagnosed and untreated for a couple years or more, myself included, have not had kidney issues. This doesn't mean that we never will, but I don't think your statement is correct and wonder where you are getting your information.
    Anne, dx'ed April 2011

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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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