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Yes, I totally agree. Dr Seo has never said or implied that the goal is to prevent every single flare. The goal is to get us into remission and hope we never flare, but that isn't realistic for most people with Wegs. The realistic goal is to get us into remission and be able to identify and treat a flare quickly, using the fewest (and least toxic) drugs.
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Exactly. Research has found that most people will flare anyway. Those that don't are the rare few. Many docs now believe the goal is to treat the flare when it arises, not overtreat to prevent something that honestly could be very minor.
Flaring at my very worse, so far, I wasn't too sick to participate in normal daily activities. If that's the worst it got again, it wouldn't be life threatening.
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Both my onset and last year's flare were "severe" disease activity (ie, alveolar hemorrhaging). Even so, Dr Seo isn't terrified about me flaring again. Neither am I, actually.
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Having gone almost 20 years without a flare, my personal goal is to never have another one after this one. Reading here and finding out that's not likely is very disheartening. Especially since each successive one could be worse than the previous ones.
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I don't think you should take it that way. Those are generalizations. You've already been unique, and I believe you will be again.
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I know how you feel Meanie. It has been 20 years since my disease has been active in any very significant way (lots of other problems though!) and I would love to be able to tell myself that it is all over. Then along comes a story about someone with a flare after 25 years.
The only encouraging point is that the last of my flares were not too bad and I am now so aware and closely monitored that anything bad should be stopped early. In the meantime, I'll just tackle problems as they arise and not worry about what might be in the future.
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Thanks, Sangye and Jack. Those are much better ways to look at it. I've been feeling crappish the last couple of days, and that always screws with my normally high optimism level.
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And I don't think you should ever assume that each successive flare will be worse. Remember, WG is NOT a progressive disease.
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Last year's flare was bad, but it was NOTHING like the original onset of Wegs. Last year I had bad joint pain but wasn't completely crippled by it. I also wasn't gasping for breath and didn't need to be on oxygen.
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The stats tell me that it is very possible to live life without a flare; it is very possible to live life with Wegener's.
Every one of you who has lived years between flares is a huge encouragement to me.
Your encouragement is vital to me.
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