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  1. Thread: Transplant

    by drz
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    19,148

    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.
  4. Thread: Mags

    by drz
    Replies
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    167

    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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    Re: Your personal experiences in treatment?

    One thing to be aware during early treatment of GPA is the effect high dosages of Prednisone can have on your feelings. I often referred to these periods of feeling a lot of energy which gave rise...
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    Re: Your personal experiences in treatment?

    i had symptoms of GPA (Wegs) for two or three years before I finally got a diagnosis and appropriate treatment. By then my health was so poor I felt unable to work so chose full retirement. Shortly...
  8. Thread: Nine years

    by drz
    Replies
    6
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    185

    Re: Nine years

    April 2010 I was trying to wake up from intubation and learn to try breathagainon my own. Must have been a bad month for Wegs for at least three of us so far on this thread.
  9. Thread: Dsap

    by drz
    Replies
    4
    Views
    168

    Re: Dsap

    I just thought it was a common side effect of GPA like several other symptoms. I see dermatolgists who freeze some spots although I don't know or see the difference between those they deem...
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    Re: ear issues with Wegener's

    GPA symptoms are very diverse and vary greatly from one person to another. Sinus infections and damage to sinus areas are very common in GPA. Blocked Eustachian tubes and ear infections are also...
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    Re: Stress and Vasculitis

    I had this as part of the symptoms when my residual GPA symptoms flared up but I think the nose bleeds caused my stress rather than the other way around. The other symptoms were easier for me to deal...
  12. Thread: Transplant

    by drz
    Replies
    204
    Views
    19,148

    Re: Transplant

    I have no idea as to what steroid dosage is appropriate for treating a patient after a transplant. But to me 20 MG doesn't seem like much. I had a boost to 15 mg from my usual maintenance of 5mg this...
  13. Thread: Transplant

    by drz
    Replies
    204
    Views
    19,148

    Re: Transplant

    I don't know if this pertinent or applicable, but when my blood sugars are off, my vision is worse. One optometrist recognized this and had me do vision tests three times to try correct my vision to...
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    Re: Imuran (Azathioprine) Users:

    Neuropathy often results in pain in feet. Nerve conduction tests will confirm the extent of nerve damage to motor nerves and sensory nerves. GPA often results in neuropathy or makes the condition...
  15. Thread: Hereditary?

    by drz
    Replies
    8
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    1,044

    Re: Hereditary?

    I suspect some of us are part of the N in the studies listed in the references. I know some of my past blood samples taken for various research studies were sent to Merkel in Philadelphia. Martha and...
  16. Thread: Cold Turkey!!

    by drz
    Replies
    2
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    186

    Re: Cold Turkey!!

    I have had to stop it or hold it for a few days for surgeries. I had no apparent issues for missing it for 4 or 5 days but long term stopping it would increase your risk of a flare.
  17. Re: If you don't immediately see the post you just made....

    You must be doing a great job cause it is a long time since I saw any garbage posts pushing some product or trolls just trying to stir people up.
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    Re: Just diagnosed from Queensland Australia

    I remember being exhibit A in a large university teachng hospital for many medical students and interns. I also gave many spiels and encouragement to be aware of our symptoms.
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    Re: Celebrate how far we have come!

    It is now almost nine years ago since I got diagnosed with GPA. My story is detailed in several prior posts in this thread and some others. It was one of our departed members, Al, who convinced me to...
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    Re: Advise on migrating to Australia

    It is unfortunate that our living options are often dictated by the health insurances. I feel I have to stay in my home state where I worked for the state cause my health insurance for retired state...
  21. Thread: Mds!!

    by drz
    Replies
    7
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    294

    Re: Mds!!

    I have taken 175-200 mg for 8 + years.
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    Re: Just diagnosed from Queensland Australia

    i am very impressed that your doctors were able to figure out the right diagnosis so quickly. Many of us went for years seeing various doctors who gave us no help.

    Did your hearing come back? Mine...
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    Re: Any virtual workout buddies out there?

    Our teachers don't have as great of credentials but then we aren't the greatest students either so it works out fine for us. Classes seem fun as well as helpful. We are all a bit surprised about how...
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    Re: Any virtual workout buddies out there?

    I have been doing Tai Chi classes for balance, plus another class on balance issues since Wegs destroyed my balance mechanism. The classes have actually helped me as much as the vestibular rehab...
  25. Re: My hands are losing circulation while sleeping

    One of my doctors recommended I use the wrist braces they sell in drug stores for carpal tunnel. I didn't think I had it and his exam didn't confirm it but they seemed to help with numbness in my...
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