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Type: Posts; User: RiverJoy

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  1. Replies
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    PR3 Antibodies Elevated

    Hi Everyone!
    Hoping one of you might be able to shed some light... :)
    I haven't been feeling well for about 5 weeks...pain that comes & goes. (this week no pain at all!)
    I had been to a walk-in...
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    Re: Hair Loss.....

    My situation was similar to GoldenJen....it was the prednisone that caused my hair to become brittle and break....I feel like I lost about half my hair...but maybe it wasn't that bad...just feels...
  3. Thread: Transplant

    by RiverJoy
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    Re: Transplant

    Just marked my calendar! Will be praying for you daily! Believing that surgery on the 19th is going to go super smooth and a quick recovery afterwards!!
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    Re: Second Opinion

    Hi Christine,
    I hope you were able to get an appointment for a second opinion. When my health started snowballing, after being in the hospital for two weeks they wanted to remove part of my lung,...
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    Re: I love someone with Wegeners

    Hi Lynette,
    Welcome! I was extremely thankful as well when I stumbled across this forum. To find a community of people that understood what I was walking through meant a great deal! Will pray for...
  6. Re: Wegener's Rash or Medication/Sun Related?

    Thank you Pete! I'll see if I can get my labs done in the next day or two!
  7. Wegener's Rash or Medication/Sun Related?

    Hi Everyone!
    At the end of June I went down to 2mg prednisone and yesterday went down to 1mg prednisone.
    I requested to have my bloodwork done about 4 weeks ago because I had a cold and my right...
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    Re: New to Wegener world

    Hi Cathy!
    Hang in there! We get it! Good days ahead!!
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    Re: Pred Taper Completed

    So happy for you Pete!
  10. Thread: First Flare?

    by RiverJoy
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    Re: First Flare?

    I so appreciate all the feedback everyone!
    Going to try the conditioner trick and biotin!
    Thanks again!
  11. Thread: First Flare?

    by RiverJoy
    Replies
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    1,502

    First Flare?

    So I was on a slow taper, finally down to 4mg prep and then I caught what appeared to be a little cold, nothing really at all.
    I woke up the next morning vomiting (alot) and a little dizzy...
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    Thank you Gilders for all the info! My ENT had...

    Thank you Gilders for all the info! My ENT had suggested a CROS hearing device. I will look into whether this is the same type of hearing aid you're referencing to see if it will help with the...
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    Wow....you've been on a long journey! Thank you...

    Wow....you've been on a long journey! Thank you so much for sharing your experience. The info regarding your tapering does help me! Thank you! I'm going to continue with the slow taper...much...
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    Hi Treesie! Hope all is going well with your...

    Hi Treesie!
    Hope all is going well with your Prednisone taper! I was wondering how your doctor first started tapering you off? My doctor keeps me on a dosage for about 4 weeks, then brings me down...
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    Thank you John & Tom! I appreciate the input! ...

    Thank you John & Tom! I appreciate the input! Looking forward to being off Prednisone hopefully by summer's end...and not looking forward to staying on Imuran....BUT very thankful there are...
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    Hello! I am new to the forum....I was diagnosed...

    Hello!
    I am new to the forum....I was diagnosed on April 24, 2017 after a 3 week hospital stay of doctor's not being able to identify the two abscesses in my lungs. Along with the month prior...
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