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Thread: When the rheumy says you don't have Wegeners anymore but you still feel awful!!

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    Default When the rheumy says you don't have Wegeners anymore but you still feel awful!!

    At my recent visit to my rheumatologitst he leant back in the chair and said your tests show that you do not have Wegeners anymore! I then asked "well how come I feel so awful so often and my legs wobble and my feet are still numb". He then said "well that must be something else'. I think I'll bounce it all off my GP in the early New Year.
    Other Wegeners - has this happened to you??????. At what point do they say you are well and how can that be when you are still feeling awful most of the time.

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    I didn't think it was possible not to have Wegener's anymore. You can just achieve remission. I think your Rheumy may have been speaking out of ...um....another part of his body

    What was he basing his assertion on? ANCA? If so, it's possible to have an ok ANCA reading and still have WG. Not common, but possible.

    It is also possible that you may be in remission but have associated issues caused by the WG. It sounds like he wasn't very clear huh?

    Definitely see your GP as soon as you can.
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    Cured of Wegener's??? Never heard of that. Like Andrew, I wonder if he's just looking at the ANCA, CRP, etc... and doesn't understand what remission means. Are there any other rheums near you? You certainly need to find out why your feet are numb. Wegs can affect the central nervous system or peripheral nerves.

    At my last visit to Johns Hopkins Vasculitis Center, Dr Seo said he isn't going to keep checking my ANCA the way Mayo used to. Despite getting better (albeit slowly) over the past 2.5 years, my ANCA continues to go through the roof. I think it's up to 1:4,000. The PR3 is still out of range, never budged. He said the ANCA is highly unreliable for most people. If it is reliable for someone (ie, it goes down as the symptoms abate), then it's a great test for that person. Otherwise, he said it stinks.

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    Have to agree with the above posts. As far as I'm aware, you can't "not have it", you just get remission if you are lucky. Also, none of the blood tests are reliable indicators of Wegener's activity, the only relevant tests are biopsies, but more importantly, the way you feel. My own specialists only use the results to monitor my wellbeing, kidney function, blood count etc.

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    My 9 months or so of what my rheumy referred to as clinical remission would still have days of feeling like crap. I always could count on foot pain or shoulder pain at least a few days a week.

    I am one of those patients where ANCA is a strong indicator. My rheumy has said as Sangye did, it isn't a good indicator for all. As soon as it started to rise in the summer, I felt the old physical effects as well gain my new ear symptoms.

    I think doctors use remission loosely in a number of gradations that they do not always explain and can vary by patient. My rheumy aims for the day with no meds whatsoever, but will still refer to medically maintained remission.

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    Hello

    I've been ANCA negative for about 18 months now, and I can honestly say, that I have felt pretty bad for most of that.

    Recently, I lost the hearing in my left ear, my chest was bad, and I felt (feel) like I have flu most of the time. Luckily, my Rheum doctor treats me on 'clinical symptoms' rather than what my bloods say, and although i'm ANCA negative, I respond well to treatment, and that in itself says a lot.

    There is no CURE for Wegeners, just a state of remission.

    xx
    Wegeners Granulomatosis diagnosed May 1995. Tracheal Stenosis since 2000.

    Proud mum of 3 beautiful girls, post cyclophosphamide (so it really can happen!) xxx

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    I 'm in remission without medication also with ANCA negative for about 18 months bat still have leg pain, and get tired very quickly, my shoulders start to pain two month ago and I start some test to diagnose it and my nephrologists said that I'm cured but my rheumatologist says that it is only in remission

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    I think it's quite hard for doctors, too. Sure, they should (in general) listen rather more closely to their patients, but it's also hard for us to remember exactly how little anybody knows about WG/Vasculitis.

    Over the years, I've been highly ANCA positive with very few symptoms and completely negative in the middle of a fulminant WG event. In the 1970s, before ANCA tests existed, my doctors told me that they thought the disease 'burns itself out' after attacking the kidneys and that I would recover completely: this after just a handful of years when anybody survived at all. How could they know the long term prognosis, when there were no long term survivors?

    They were terribly wrong, then, and continue to make the same sorts of pronouncements.

    As somebody who is in 'chemically retained remission' and has never got off the meds in over thirty years, it's equally difficult for doctors to make a positive diagnosis of a flare-up considering my symptoms. Why shouldn't I get pain in my ears and sinuses, when they have been badly damaged in the past? Why shouldn't I get joint pain and aching limbs, when I've been taking these drugs for so long?

    Doctors, quite rightly, are very unwilling to prescribe the drugs we want if they haven't got absolute proof that we need them. It's their job not to jump to concusions. Of course, House would have a moment of brilliance and everything would be hunky-dory, but he is (fortunately or unfortunately) fictional.

    We here are something of a self-selecting minority. I'm not sure what the percentage of WG patients who recover fully and need no further treatment, ever, is. I'm sure they exist. The idea of 'grumbling activity' is quite new among medics. Quite recently, doctors thought that WG is either active or not. Some doctors are still a bit behind the game. However, the apearance of so many shades of grey in disease activity makes doctors' decision making task even harder.

    It does seem obvious to me, though, that the lack of truly reliable diagnostic tools available to physicians suggests that they should be listening more to patients, rather than attempting to make judgements based on blood results. They have tried to do this, of course, with (for example) the BVAS system, but even this seems a bit lacking in something.

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    I'm anca positive that responds well to treatment but goes up when treatment stops.
    Dr's dont't know much about how WG effects each of us, it varries so much. Maybe he really wanted you to be WG free and its just his wish for you. Maybe there are WG free people out there who do not have to visit our little forum here. Now isn't that a thought.
    Make sure that you listen to your body and let that guide you when you go to see your Dr and have treatment. Talk to another rheumy and get as many opinions as needed so that you are comfortable. for better of worse I have started to be the primary
    "doctor" for myself since my rheumy thinks my family should be the primary doc and my family thinks the other way, my pulmonologist is the head of hospital so is busy and realy shouldn't be the primary, my neurologist was the first to diagnose WG properly, now I'm off to see a nephrologist to see my bladder. All in all I now take more interest in what where and when I get and read up as much as I can and let everyone kn ow that I feel slightly let down. I also listen to my body and get in to see either my family of rheumy when I feel I need to. Cheers,
    Last edited by jola57; 01-02-2009 at 07:50 PM.
    Jolanta

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    Really great responses Twice and Jola 57. They were great to read for some other perspectives. Thanks.
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