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Type: Posts; User: drz

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  1. Thread: Avacopan

    by drz
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    3
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    93

    Re: Avacopan

    It will be interesting to see who offers this treatment first after it gets clearance from FDA! It may take a year or two before any of us see it.:sad:
  2. Thread: Recently diagnosed

    by drz
    Replies
    3
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    102

    Re: Recently diagnosed

    Even when doctors consider you in remission, residual symptoms can still cause you discomfort. Many people find they have to stay on pred and and some other drug to suppress immune system to be able...
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    Re: Morning Sickness (Not Pregnant)

    Residual symptoms can differ from initial symptoms preceding diagnosis and treatment. Usually there is some over lap but GPA symptoms can evolve over time and change into some thing new that might...
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    Re: New Patient appointment at Cleveland Clinic

    WOW! That is impressive. Good job and best wishes for some great help soon.
  5. Thread: Your Thoughts

    by drz
    Replies
    9
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    238

    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...
  6. Thread: Transplant

    by drz
    Replies
    258
    Views
    28,557

    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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    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 ...
  11. Thread: Hello from Shawny

    by drz
    Replies
    14
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    525

    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....
  12. Thread: Transplant

    by drz
    Replies
    258
    Views
    28,557

    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...
  14. 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...
  15. 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...
  17. 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...
  18. Thread: Lena's story

    by drz
    Replies
    12
    Views
    439

    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...
  19. 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.
  20. 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.
  22. Thread: Transplant

    by drz
    Replies
    258
    Views
    28,557

    Re: Transplant

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

    by drz
    Replies
    6
    Views
    745

    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...
  25. Thread: Transplant

    by drz
    Replies
    258
    Views
    28,557

    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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