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Thread: Less Severe = Shorter Remissions

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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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    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 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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    Good explanation, drz. It's true that I was coasting along with my sinus and ear issues for 2.5 years, sick enough to have it interfere with my life, but not life threatening at the time. Then things escalated and my lungs got involved and that got worse over a couple of months to the point where I thought I had pneumonia. Others have had worse lung involvement, but without diagnosis and proper treatment at that point, I do believe it would have continued to escalate and I would have died within a couple more months.
    Anne, dx'ed April 2011

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    I was at the Vasculitis Symposium last year and remember hearing about "less severe" cases (like mine) seeming to flare more frequently, and with shorter remissions.
    --- a.k.a. Karen

    "Things turn out the best for people who make the best of the way things turn out." -- Art Linkletter

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    Quote Originally Posted by makabe View Post
    I was at the Vasculitis Symposium last year and remember hearing about "less severe" cases (like mine) seeming to flare more frequently, and with shorter remissions.
    That's interesting. I think I have a less severe case, although I did have some lung involvement that was blasted by CTX and hasn't shown signs of returning at all. The nasal/sinus/ears stuff I do still have, largely because of permanent damage to the area, although it's a lot better. But I have flared the last two winters since 2012 when I got off CTX and onto MTX and things were fairly well under control.
    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.
    Hi Annekat,
    Yes, the literature specifically states that the death rate from mpa and gpa untreated is 5 months.
    World Allergy Organization | Allergic Diseases Resource Center

    This doesn't mean that everyone is subject to this statistic, but just their clinical finding.
    My mom has had mpa for 3.5 years untreated.
    The literature, also states that the average time to renal failure is 2-3 years, but not all get renal involvement.
    Last edited by mrtmeo; 09-20-2014 at 06:14 AM.

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    Quote Originally Posted by annekat View Post
    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.
    Hi Annekat,
    I'm sorry.
    I should have elaborated.
    I just assumed it was common knowledge of the clinical incident rates.
    This statistic is from the clinical studies and cases and doesn't mean that everyone with gpa or mpa will fit this.

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    Quote Originally Posted by mrtmeo View Post
    Hi Annekat,
    I'm sorry.
    I should have elaborated.
    I just assumed it was common knowledge of the clinical incident rates.
    This statistic is from the clinical studies and cases and doesn't mean that everyone with gpa or mpa will fit this.
    It's OK. I think part of the issues we are finding disagreement on is just semantics. Some of us may spend a lot of time looking at clinical studies, but most of us have other things to do in our lives and are more concerned with what each other are going through, what our doctors are saying, and how we can help newcomers through our own experience. We like seeing some clinical studies once in awhile, too. We have often suggested that newcomers not get too wrapped up in what they see on the internet, as different sites will say different things and can easily be misinterpreted. Even the top sites haven't always been updated in awhile, and people may get scared by what they see, which may be the most extreme examples. We know that many on here are doing quite well and haven't had even half of the variations of symptoms described on these sites. Others are not doing as well, we know, and we could all have more severe episodes in the future. I looked at the site you linked to and saw that it goes into a lot of depth, and will probably spend more time looking at it again. I did notice, however, that it called Wegeners and vasculitis an "allergic" disease, which I have never heard it called before in the 3.5 years since my dx. That seemed odd to me. True, allergies involve an improper reaction of the the immune system, too, and people with allergies may be more predisposed to AI diseases. We don't know, though there are theories about what triggers them. The experts so far are still saying they don't know for sure what causes WG.
    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?
    As was already posted several studies quote that median life expectancy of 5 months after diagnosis if left untreated, but I'm not sure where they get that number from. I mean it would be a bit silly if they kept a group of Wegs each year without meds to see how long they survive, so maybe its based on data from before there were any meds avaialable to us, an back then it probably took a much longer time to diagnosed as ANCA & PR3-values are a more recent discovery. I also remember reading that 90% died within a year if left untreated, but again why would anyone be completely untreated?

    I did read a dissertation about Wegs, which collected data from 1980 and forward, and it had more data on the mortality rates. Not really sure if its useful info, since I don't think dwelling on the subject really has any benefits. Additionally I don't think those statistics can be applied that easily from person to person, I mean it makes a great difference if you are talking about someone who is 85 years old and the first symptom is kidney failure, or if you are talking about a 15 year old who starts with nasal symptoms. Obviously the 85 year old wouldn't be expected to live for 20 years even without Wegs, but will still affect the statistics.. A 20 year follow-up wouldn't either take into account the better meds people have today and the advances done in recent years, like account for Rituximab and less use of cyclos. But that's just my opinion
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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