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Thread: Less Severe = Shorter Remissions

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    Quote Originally Posted by annekat View Post
    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.
    Hi Annekat,
    Vasculitis has been associated with hypersensitivity reactions, especially, leukocytoclastic vasculitis.
    Here is another doc stating untreated gpa mortality of 5 months.
    https://online.epocrates.com/dx/inde...51&activeTab=9

    I am so glad that this is no longer a disease with little treatment options and now, has some very much improved treatments with far better outcomes.
    I cannot imagine what it was like to have vasculitis prior to cytoxan.

    Hopefully, with the newer biomarkers they find for these diseases, they can diagnose much earlier preventing damage.
    It is so important to get the awareness out to the people.

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    I am not arguing with the 5 month statistic as long as we are making it clear that we are talking about 5 months UNTREATED, AFTER DIAGNOSIS. Especially if the dx is made during a severe and life-threatening flare, rather than just during moderate sinus issues. And I completely agree with Wegetarian's point of view above. Why would anyone with a diagnosis be going untreated, anyway? So what is the point of dwelling on this statistic?

    As I said further above, I feel that my lung issues were severe enough at dx that if I hadn't been diagnosed and treated, I probably would have died within a few months, statistics or not. But it is not likely that would have happened, because in this day and age, most would be diagnosed before long with the symptoms I was having. And others have had much worse. I was only in the hospital overnight, and getting a dx after that did take some doing, as the hospital doc had suggested WG, based on a CT scan, but just forwarded his observation on to my other docs, and it was up to me and them to take it from there. So yes, I could have just flaked on the situation, but I would soon have gotten worse and would have ended up in the hospital again, for a longer period of time, where I would no doubt have been diagnosed and treatment would have started.
    Last edited by annekat; 09-21-2014 at 02:23 PM.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    Why would anyone with a diagnosis be going untreated, anyway? So what is the point of dwelling on this statistic?
    Hi Annekat,
    My mom was p-anca postive in Jan 2012, but no one knew what this meant, so she went untreated for years.
    I know she didn't actually have a diagnosis, but someone should have known what the p-anca meant.

    I was not dwelling on the statistic, but just giving u another example of the 5 months untreated stat that wasn't referring to hypersensitivity.

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    Quote Originally Posted by mrtmeo View Post
    Hi Annekat,
    My mom was p-anca postive in Jan 2012, but no one knew what this meant, so she went untreated for years.
    I know she didn't actually have a diagnosis, but someone should have known what the p-anca meant.

    I was not dwelling on the statistic, but just giving u another example of the 5 months untreated stat that wasn't referring to hypersensitivity.
    You can call me Anne. Every case is different. True, someone should have known what the positive anca meant. But during the time she was untreated, and should have been diagnosed, it may not have been severe enough for her to die within 5 months. Many of us have had what we call "smoldering Wegs", where it can cause symptoms for years but they may seem to docs like just typical sinus issues, asthma, etc. That's why we often don't get diagnosed until it gets really bad. I guess part of my point, which I didn't make, was that having this "smoldering" type of Wegs would not likely kill a person in 5 months whether or not they were lucky enough to get a dx early on. And at which point, if dx'ed, they would most likely get treated and we wouldn't see them get to the more severe and life-threatening stage. I'm not saying your mom had "smoldering Wegs"; I do not know what her symptoms were, or how severe, during her undiagnosed and untreated period. If they were severe, then I guess she was very lucky not to die within 5 months. And I don't think being dx'ed, whether treated or untreated, would be an indicator of whether or not someone will die within 5 months. Some cases are severe enough that the person will die within 5 months despite dx and treatment. Others are light enough that there could be a diagnosis, but the person could foolishly refuse treatment and go on living for years before it possibly got severe enough that they would die without treatment.

    I was not the first person to say that we needn't dwell on the statistic, but I did agree with his point of view. I did not directly say that you were dwelling on the statistic. I am dwelling on it just as much by putting this much into the discussion of it. I think Wegetarian just meant that it is a statistic for something that would rarely happen, since people who are diagnosed are normally treated, so how is it relevant? I would worry more about people who are NOT diagnosed and not treated, especially if the symptoms are severe, which they are not always.

    Most of all, I wish the best for your mom, and hope she is better than when you first came onto the forum. I know you've been very worried and I sincerely hope she pulls through and has some quality years of life ahead of her..
    Anne, dx'ed April 2011

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    Thank you Anne and I wish you and everyone with vasculitis a cure.
    I fear every moment and every cmp that shows her kidneys getting worse.
    I believe the natural supplements and her steroidal inhaler have been giving my mom all these years have kept the disease a little less than it could have been.

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    Quote Originally Posted by mrtmeo View Post
    Thank you Anne and I wish you and everyone with vasculitis a cure.
    I fear every moment and every cmp that shows her kidneys getting worse.
    I believe the natural supplements and her steroidal inhaler have been giving my mom all these years have kept the disease a little less than it could have been.
    I especially sympathize about your mom's kidneys, since I don't have that issue at all, as yet, and can only imagine how much more scared I'd be if I did. It seems she should be getting treatment that will make them better, not worse. If she is on RTX, it does take some time to start working, so that may happen and she may improve. Same with CTX, although it works a little faster, but it is used less and less because of it's potentially toxic side effects. Good luck to you both!
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    I especially sympathize about your mom's kidneys, since I don't have that issue at all, as yet, and can only imagine how much more scared I'd be if I did. It seems she should be getting treatment that will make them better, not worse. If she is on RTX, it does take some time to start working, so that may happen and she may improve. Same with CTX, although it works a little faster, but it is used less and less because of it's potentially toxic side effects. Good luck to you both!
    Hi Anne,
    I am so glad u don't have the renal issue with this and pray u never do!

    My mom had a one week's dose of IV ctx and 4 weeks of rtx.
    Her kidney function was improving after the last infusion, but she got anemic again because the nephrologist forgot to give her more Epogen and her kidney function got worse again.
    She is 3 months from her first rtx infusion and seems like she is in another flare.
    I know for most it takes 3-6 months to reach remission and the waiting game is the hardest.

    I didn't know that rtx works slower than ctx.

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    Bing505z is offline Banned for being a douchebag
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    Most treated vasculitis patients will experience renal failure within 2-3 years


    Source?

    I do know Rituxan reversed my kidney issues, ear issues, sinus issues, "not being able to walk" issue. Its less than a year since I was diagnosed, and I feel like I never had the disease. I did lose my right lung upper lobe, but I do not feel any different with breathing than before I got GPA. I do not take any meds. No pred' ....nada. All the soreness, all the inflammation ..... gone. For me, Rituxan did the trick for sure.

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    Hi, Mrtmeo, I don't know how much faster CTX is to work than RTX, I just know that it is somewhat faster. I think your mom getting the CTX by IV followed by the RTX sounds like a good plan. That was probably to try to jump start the suppression of disease activity. I'm sorry things didn't work out so well after that, with the doc forgetting part of the treatment and all. As far as remission goes, it takes many of us longer than 3-6 months. But we usually do show a lot of improvement in that time and get a lot of our normal lives back, or what we call the "new normal". Remission is sort of a subjective word, and different docs may use it differently. In my 3.5 years of treatment, I have never been declared in remission, though I have felt pretty close to it. Like right now, I feel quite good. But I've tended to have mild flares in the winter, so that could happen again. It is so true that each case is different, and for many, stress levels in their lives may be a big factor in having trouble reaching remission. Also, most in remission still depend on some meds to keep them there. The lucky few, and there are some on here, have reached remission in 3 to 6 months and are also off the meds. In any case, you are right about the waiting game being hard to take. Especially when it is with someone as important to you as your mother. I think it likely that even if she doesn't go into an official remission sometime this year or early in the next, she will show a lot of recovery, improvement in her symptoms and the numbers, and begin to enjoy a better quality of life. I certainly hope so. I wonder if it isn't nearly time for another RTX infusion, and if she is doing badly, maybe a little more IV CTX wouldn't hurt, either. But I am not a doctor.
    Anne, dx'ed April 2011

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    Quote Originally Posted by Bing505z View Post
    Most treated vasculitis patients will experience renal failure within 2-3 years


    Source?

    I do know Rituxan reversed my kidney issues, ear issues, sinus issues, "not being able to walk" issue. Its less than a year since I was diagnosed, and I feel like I never had the disease. I did lose my right lung upper lobe, but I do not feel any different with breathing than before I got GPA. I do not take any meds. No pred' ....nada. All the soreness, all the inflammation ..... gone. For me, Rituxan did the trick for sure.
    He might have meant untreated, rather than treated, vasculitis patients. But I am still doubtful about the statement as a great many of us have gone untreated for longer than that without renal failure or any kidney problems whatsoever. In any case, I'm glad you are doing so well in less than a year and are completely off the meds! Feeling like you never had the disease is a strong statement and a great one. You are one of the lucky ones, and it's nice to know it is possible. Was your GPA caught early?
    Anne, dx'ed April 2011

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