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    Re: Suspected Sneaky Kidney Involvement

    Thanks for your input. It never occurred to me that the immunosuppressive drugs could also be part of it. Every day something new is messing with me, but not as bad as the beginning. I just faxed...
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    Re: Suspected Sneaky Kidney Involvement

    Hello everyone. Just out of curiosity, does mild decreased kidney function cause dry itchy skin?? That started yesterday but I thought it was from the cold winter weather, so I ignored it. Just...
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    Re: Suspected Sneaky Kidney Involvement

    Well peeps, today is March 1st 2021... it's a new month which requires blood work, no urine this time. It's the Urologist and I that were curious as to why the kidneys are misbehaving. So I've got...
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    Re: Suspected Sneaky Kidney Involvement

    I totally agree with you on everything. Curbside pickup is harder for me financially because everybody's charging Covid prices. Odd how today is a perfect day compared to yesterday! I can't...
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    Re: Suspected Sneaky Kidney Involvement

    This really helps a lot, thank you! Sometimes I believe it's best to get advice from other Wegener's patients; especially if they've had it longer than me. I find that I often forget how bad it can...
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    Suspected Sneaky Kidney Involvement

    Hello everyone. I tried coming on regularly over the past couple months just to say hello to everyone until I started getting sick again. I just thought it was a typical day for me and overlooked...
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    Re: Thank You Everybody!

    Thanks, gunnyl and wishing you the same.
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    Re: New member diagnosed in January 2020

    Welcome Susan! After reading your story I had to shake my head and remember it was YOUR story and not mine. :) Mind you, I haven't had things as bad as you have experienced. I learned a lot from...
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    Thank You Everybody!

    It has been quite a while since I've been on here. From 2009 when I learned the word, Wegener's, the word, Vasculitis and then later it became Granulomatosis with Polyangiitis. Trying to pronounce...
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    I asked about being compensated from day one. ...

    I asked about being compensated from day one. They said they only help patients pay for parking. Because I'm taking a bus, that doesn't count.

    Just recently I heard about Phil. Sorry to hear. ...
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    I've heard a lot of good things about Dr. Merkel...

    I've heard a lot of good things about Dr. Merkel and I live in Canada. I'm sure you're in good hands. My question is about Rituximab. What are the side effects compared to the old cyclophosphamide...
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    Medical Travel For Vasculitis

    I haven't been on this site for a while. I've been very busy taking care of Wegener's so it doesn't take care of me. :wink1:

    I have been off work since February 2015 to now on disability and now...
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    Kidney Biopsy A Success!

    So I found out a week later the left kidney was perfectly normal after it was acupunctured. That's the good news. What I don't understand is why my emotions were put on high alert making me sicker...
  14. Thread: Kidney Biopsy

    by Chadwyck
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    Well, the time has come...no urinary tract...

    Well, the time has come...no urinary tract infection!!! This was all Wegener's working behind the scenes... I found out today I have to do the kidney biopsy. But a month ago, was terrified about...
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    Please tell me you weren't driving to reply... I...

    Please tell me you weren't driving to reply... I can wait until you're parked somewhere safe. So you had a negative test all along or positive to negative? I don't understand that part. My biggest...
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    OMG.... I was just going to say that! LOL

    OMG.... I was just going to say that! LOL
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    Understanding the cANCA test

    A friend of mine asked me recently about my ANCA tests in the past. This is a question I kept asking myself but since I started to feel so much better after treatment, I never bothered to ask...
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    Unnecessary Emergency

    Most of you already know I have just restarted prednisone a few weeks ago in addition to last year's March-December dosages. I started getting pains in my bones like I did 3 years ago but not as...
  19. Thread: Kidney Biopsy

    by Chadwyck
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    I was actually supposed to do a kidney biopsy in...

    I was actually supposed to do a kidney biopsy in 2010 but because of the time to wait for a rheumatologist it could have led me to kidney failure. This is why they went into the sinus for it because...
  20. Thread: Kidney Biopsy

    by Chadwyck
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    I was in a bad "twinkie zone" from the meds...

    I was in a bad "twinkie zone" from the meds during my hip replacement. LOL I convinced myself that all bills were paid and I didn't bother paying them. It was when I owed twice as much money the...
  21. Thread: Kidney Biopsy

    by Chadwyck
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    Thanks everybody for all your support and advice!...

    Thanks everybody for all your support and advice! I won't know until the end of this month. Every Tuesday starting last week is a urine test to see if blood appears in it. I was told by the...
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    I got that answer just today..."you don't look...

    I got that answer just today..."you don't look sick"

    I told the person... I (feel sick) I didn't say (I look sick) in the mirror. When you start to live in my body I will listen to you, until...
  23. Thread: Kidney Biopsy

    by Chadwyck
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    Kidney Biopsy

    Has anyone had a kidney biopsy without freaking out?? I need to know what to do to calm myself down. I found out today from the nephrologist that it may be necessary.

    The steps are:

    1) Do...
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    Yes, Debra C. I'm also on Imuran... 100 mg...

    Yes, Debra C. I'm also on Imuran... 100 mg daily. I've been doing that since remission. Last November I had to cut it to 50 mg daily because I became neutropenic as a result of being on it for so...
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    How right you all were! I think I spoke too soon...

    How right you all were! I think I spoke too soon but still caught on fast enough to be aware. For me, the right taper down speed for prednisone is pretty much looking at how I did in the past. ...
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