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    mouth sores

    The ulcers are likely apthous ulcers. For differential, apthous ulcers do not form on tissue that is attached to bone (the 'hard' palate or attached gingiva). If they are on the soft palate, cheeks...
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    My daughter received Rituximab (Rituxin) after a...

    My daughter received Rituximab (Rituxin) after a very brief trial of methotrexate had no effect. She was never placed on cytoxin, as we and her doc were concerned for all the same reasons you may be....
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    Hi Catie, I am impressed and happy for you to...

    Hi Catie,
    I am impressed and happy for you to have found this forum and pleased that you are brave enough to post about your condition. Acceptance that you find yourself here must be very difficult...
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    Hi K, I'm from Dallas and my daughter who has...

    Hi K,

    I'm from Dallas and my daughter who has Weg lives in Austin. We went through similar emotional trauma upon first diagnosis. The good news is that with aggressive, experienced treatment your...
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    Andrew, I think this is a very good idea and one...

    Andrew, I think this is a very good idea and one that is a long time in coming. Most of us do not live near a major Vasculitis Center, and have to plan trips to these sites carefully. A list of local...
  6. Thread: Dentist Advice

    by Palmyra
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    I certainly hope it is your last surgery for a...

    I certainly hope it is your last surgery for a VERY long time Dee!! It sounds as if you have quite the great team established for your care. Best wishes to you, and as your avatar states, "Never give...
  7. Thread: Dentist Advice

    by Palmyra
    Replies
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    9,669

    Dental advice

    I am a US trained dental professional. It is difficult to translate standards from one country to the next. To be honest, most adults world-wide have chronic dental (periodontal) issues they are not...
  8. Hi Marilyn....my daughter developed acute...

    Hi Marilyn....my daughter developed acute pancreatitis while on immuran. It was potentially life threatening, required surgical stents and involved a protracted & long recovery. Some can take it with...
  9. Thread: white cells

    by Palmyra
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    I'll keep the group posted as to Alison's...

    I'll keep the group posted as to Alison's progress...her appointment with the hemotologist is not until 6th of May.....we'll hope for infection induced elevation in the mean time. Hugs!

    ~Jane
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    Thank you for all your responses. Her appointment...

    Thank you for all your responses. Her appointment is not for a couple of weeks, so some time to worry while waiting for what I am guessing are labs/tests/ then hopefully some results. I will keep all...
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    Elevated neutrophils

    Hello to the group!

    Has anyone experienced an elevated neutrophil count in blood tests? My daughter's most recent blood work showed elevated neutrophils. She has previously had normal blood work,...
  12. Thread: white cells

    by Palmyra
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    This is an old thread, but I am hoping that those...

    This is an old thread, but I am hoping that those previously engaged will respond. My daughter has recently been referred to a hemotologist(US spelling,)/oncologist for elevated neutophils as well....
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    Hi Lupita, Prednisone taken orally at any...

    Hi Lupita,

    Prednisone taken orally at any level is not a prerequisite for receiving a Rituxin infusion. Many people happen to be on it at the time of their first (or later..) infusions, but the...
  14. You may not think it Phil, but you are most...

    You may not think it Phil, but you are most worthy of admiration. :thumbup:
  15. Sorry to hear of some continued struggles Phil,...

    Sorry to hear of some continued struggles Phil, but you are rather amazing and to be admired. No fears of sharing all of your plugs/boils/blood and guts for the benefit of any Weggie that speaks...
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    Alysia, The drugs my daughter takes to control...

    Alysia,

    The drugs my daughter takes to control Weg (Rituximab or 'Rituxin' infusions, along with the occasional prednisone) has controlled all of her Crohn's symptoms, as it is a very similar...
  17. Yes Phil, I too have heard of Dr. Lebovics and...

    Yes Phil, I too have heard of Dr. Lebovics and that he is the 'go to' guy to consult and see for all things noses and Weg. I do know of some very talented local plastics docs....I just don't know if...
  18. Many thanks dirty Don, and very happy for your...

    Many thanks dirty Don, and very happy for your successful outcome. So, you did have your procedure done by an ENT....did you scout about and shop carefully before deciding to proceed with this...
  19. Recurrent sinus infection (and proposed surgery to correct deviated septum)

    Hello to all, and sorry to have been gone for a stretch,

    I haven't post much on the forum lately...and that's a good sign meaning my daughter's condition has been 'quiet' for a while. But, now...
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    Hi Alysia, My daughter was diagnosed with...

    Hi Alysia,

    My daughter was diagnosed with Crohn's disease, then later developed Weg. Not to say you have both, but an individual can have more than one autoimmune condition.

    In my years of...
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    Hi Stormy, I am sorry for your diagnosis, but...

    Hi Stormy,

    I am sorry for your diagnosis, but you are on a very good site to obtain information regarding this disease. There is a steep learning curve with this diagnosis, and you may find that...
  22. Cindy, and her challenge in Alaska...has anyone heard?

    Just a quick note to inquire if anyone has heard how Cindy A has been doing with her "Awareness" quest for Vasculitis and the Rare Disease Network? We haven't seen a post for awhile and the Iditarod...
  23. :thumbup: Better than good news Aria Mo!! A...

    :thumbup: Better than good news Aria Mo!! A concerned involved Doc, that knows what he is talking about....its like a dream date w/ Mr Right!
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    Yea!!!!! Best case scenario!!! Very glad it...

    Yea!!!!! Best case scenario!!! Very glad it worked out the 'simple' at home way!
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    Power to our friend Light Warrior! May you find...

    Power to our friend Light Warrior! May you find much curative rest and healing over the Holiday. We are thinking of you dear lady!
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