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  1. Thread: Your Thoughts

    by drz
    Replies
    8
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    60

    Re: Your Thoughts

    Prednisone dosage needed can vary greatly just like our symptoms of GPA over time as well as from person to person. After my initial diagnosis in 2010 I was able to taper my pred down to 10 without...
  2. Thread: Transplant

    by drz
    Replies
    258
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    27,181

    Re: Transplant

    I think just staying off dialysis would be a big win. Hope things continue to work out well for you. All of us in various stages of kidney disease can empathize with your ordeal.
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    Re: Got a cold, should we go to doctor?

    Some times we guess wrong about our symptoms. Once I thought I had a cold or bronchitis and it turned out to be pneumonia. Another time my "probable cold" turned out to be the flu. So sometimes...
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    Re: Imuran Side Effects

    I had the immature red blood cells from one drug I tried to take instead of Bactrim so I ended up getting Pentamadine nebulizer treatment every month instead. I have been on AZA almost nine years so...
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    Re: Methotrexate without Prednisone

    I would think the dosage would be most important. Many people take small dosages of 10 or less for ever because of other chronic conditions and have few problems with such a small dosage. For me it...
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    291

    Re: Imuran Side Effects

    I started with a very low dose in 2011 and gradually worked up to my therapeutic level of 200 and then it was backed down to 175 due to elevated liver enzymes. My doctors are saving RTX to use again ...
  7. Thread: Hello from Shawny

    by drz
    Replies
    14
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    391

    Re: Hello from Shawny

    High doses of pred will most likely affect your emotions and may require some adjustments to your other meds to compensate for this influence but good follow up care should help you navigate this OK....
  8. Thread: Transplant

    by drz
    Replies
    258
    Views
    27,181

    Re: Transplant

    The trend is what is disturbing. Other wise my readings of kidney function usually fluctuate from test to test and my doctors are not concern over changes of a few points as long as they go both up...
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    Re: PR3 Antibodies Elevated

    If you are having any symptoms besides anxiety I would go to a walk in or urgent care facility for more tests. One can lose kidney function in days and not be aware of any problems till the damage...
  10. Re: shankxonline - My path to identify GPA and overcome it

    I remember being diagnosed with plantar fascitis from pain in my feet years before I was finally and correctly diagnosed with Wegener's. The treatment for the plantars of course did little or nothing...
  11. Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Sorry to hear about your issues. Hope things improve for you. Your case exemplifies how GPA can cause bad things to happen quickly and affirms the need to get quick and appropriate care for any...
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    Re: 1000mg or 2000mg rtx ?

    There seems to be different schools of thought on RTX dosage. No research results to help clarify the issue. Is it better to have smaller dosages more often or large dosages at longer periods of...
  13. Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Aggressive treatment can usually save the kidneys if caught in time. And often, usually, most symptoms improve with right treatment. For most of us things are usually at their worst at the time...
  14. Thread: Lena's story

    by drz
    Replies
    12
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    352

    Re: Lena's story

    Muccinex can help thin the mucous. I take a generic form 2x a day and more if needed. I also find the SinuPulse machine to work better for me than the squeeze bottles. I also make my own rinse with 3...
  15. It is great to read about people surviving...

    It is great to read about people surviving decades of GPA even when the treatment was not as refined as it is today. This should be reassuring for people recently diagnosed.
  16. Re: Imuran (Azathioprine) and Sun Exposure - How Careful Are You?

    I too have been using generic AZA for over 8 years at a much higher dosage (175 mgs) but didn't know that sun exposure was a problem or risk. No one has warned me about it. Skin lesions seem just...
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    Re: New here, being diagnosed

    Glad you were lucky enough to get an early diagnosis and proper treatment. Things now sound encouraging.
  18. Thread: Transplant

    by drz
    Replies
    258
    Views
    27,181

    Re: Transplant

    Sorry to hear about the fluctuations in kidney function and extra stress it causes. Hope things get better soon.
  19. Thread: odd symptoms?

    by drz
    Replies
    6
    Views
    661

    Re: odd symptoms?

    What do the neurologists recommend? Any further testing? Wegs does increase our risk of many other medical problems.
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    Re: Son, 20 GPA diagnosed 2 weeks ago

    I went through this process 9 years ago and my story is listed on this forum in several places. Recovery is a slow process but mine was much slower than your son's is apt to be since I also had type...
  21. Thread: Transplant

    by drz
    Replies
    258
    Views
    27,181

    Re: Transplant

    i hope they get it sorted out quickly and that it turns out to be an easy fix for you. It must be hard dealing with all the uncertainty about what is going on in your body while hoping for a good...
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    Re: Hydroxychloroquine?

    I some times wonder about what is going on with Wegs in my body when I have some increased residual symptoms like nose bleeds, headaches, dental sensitivity, joint pain, eye pain, fatigue, etc but...
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    Re: Building Resistance to Rituxan

    I love the quote from Jack. I will always treasure his advice and support he gave me when I first started on this forum.
  24. Thread: Mags

    by drz
    Replies
    7
    Views
    567

    Re: Mags

    Yes, I can empathize.

    Wegs took my hearing and balance in right ear. Left ear was already damage from years of infections and several operations including a mastoidectomy. So my hearing and...
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    Re: Your personal experiences in treatment?

    Slower tapers down on Pred have less return of residual GPA symptoms. I went down by 1/4 mg every week or two and had minimal difficulty with return of GPA symptoms and they usually went away in a...
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