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  1. Replies
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    I hope the tapering continues to go well!

    I hope the tapering continues to go well!
  2. Thread: John

    by sadpixie
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    5,679

    Keeping John and your whole family in my thoughts!

    Keeping John and your whole family in my thoughts!
  3. Replies
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    I will start working on this asap!

    I will start working on this asap!
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    I don't post much but try to read a bit here...

    I don't post much but try to read a bit here every day. Your posts have been a wealth of knowledge for me throughout these past few months. Thank you for everything you do.
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    That is great news!

    That is great news!
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    I am so glad to hear that he had a good day. I...

    I am so glad to hear that he had a good day. I had a lot of problem with swallowing and keeping food down when I was first diagnosed in December 2010. I also had a thrush infection but no other...
  7. Thread: member map

    by sadpixie
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    11,878

    Very cool!

    Very cool!
  8. Thread: Ear Problems?

    by sadpixie
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    WG did affect my ears, especially the right one. ...

    WG did affect my ears, especially the right one. It started with some stuffiness and eventually pain and loss of hearing. I ended up having an ear tube put in before being diagnosed with WG and...
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    Great news! I hope he continues to improve.

    Great news! I hope he continues to improve.
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    Recently down to 10mg of pred and no other...

    Recently down to 10mg of pred and no other medications at the moment.
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    CellCept and hair loss

    I am currently on 2000mg of CellCept and since starting it my hair has been getting thinner and thinner. Today after taking a shower there was more than a handful of hair in the drain and my brush...
  12. Thread: new member

    by sadpixie
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    21
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    3,826

    Welcome to the group! I was diagnosed in late...

    Welcome to the group! I was diagnosed in late Nov/early Dec 2010 and also have two young kiddos. I have sinus involvement with major hearing loss in one ear and saddle nose. I just finished up...
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    Movie: Repo! The Genetic Opera Book: It...

    Movie: Repo! The Genetic Opera
    Book: It changes a lot.... currently The Graveyard Book by Neil Gaiman
    Song: ditto to the changing.. Remnants of a Deeper Purity by Black Tape for a Blue Girl...
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    That is exactly what happened in my old rental...

    That is exactly what happened in my old rental too, it was behind the tub and the bath/shower surround. I was a huge fan of reading in the bath (it was my me time after my husband got home) and...
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    B+ blood type here. I have often wondered if my...

    B+ blood type here. I have often wondered if my Wegs was triggered by mold exposure at my last townhouse.
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    Congratulations! That is great news! :)

    Congratulations! That is great news! :)
  17. So glad to hear that the infusion went well!

    So glad to hear that the infusion went well!
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    I know the feeling. I am waiting for the Imuran...

    I know the feeling. I am waiting for the Imuran results as well as my potassium bloodwork. It's always hurry up and wait with this stuff.
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    I ended up being unable to keep my appt. with...

    I ended up being unable to keep my appt. with Capizzi due to being hospitalized at the time of the appt. My local hospital tried to get my transferred to Nashville so that I could see him while in...
  20. Hope it continues to go well!

    Hope it continues to go well!
  21. Replies
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    Good luck!

    Good luck!
  22. Replies
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    I have an appt with Dr. Capizzi in one week and...

    I have an appt with Dr. Capizzi in one week and I'm very much looking forward to it. I've had lots of issues with my local rheumy and havent been able to stay out of the hospital for a week at a...
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    I do have hearing loss. 70% in my right ear and...

    I do have hearing loss. 70% in my right ear and my left ear is giving me lots of issues currently.
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    Thank you, will address it with rheumy in the...

    Thank you, will address it with rheumy in the morning. He says he wants me on a lower dose of pred asap but yet this. I do have severe ear and sinus pain at the moment and massive inflammation per...
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    Ok much progress was made today after much...

    Ok much progress was made today after much pushing for answers and treatment plans, also talked with family and they are more than anxious to help me get to a specialist so I am very optimistic that...
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