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  1. Thread: Central NY?

    by newbie
    Replies
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    3,240

    I am concerned that my rheumy isn't as...

    I am concerned that my rheumy isn't as knowledgeable as he would like to appear and my gp is no help at all. She washed her hand of me soon as dx and is not even willing to order tests or...
  2. Thread: Central NY?

    by newbie
    Replies
    7
    Views
    3,240

    JeanMarie, is this the email of someone to...

    JeanMarie, is this the email of someone to contact regarding the group?
    Also, which newsletter did you find this in and how might I get a copy? I follow the Vasculitis Foundation on FB and their...
  3. Thread: Central NY?

    by newbie
    Replies
    7
    Views
    3,240

    Central NY?

    Taking advice and posting here to see if anyone else is located in CNY region.
    If so, where/ whom do you go for treatment?
    I am currently being treated by Dr. Hom Neupane at Upstate Medical...
  4. Thread: First Flare

    by newbie
    Replies
    18
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    3,038

    Would you mind clarifying what was invlolved when...

    Would you mind clarifying what was invlolved when you say "slight increase in some of my labs?"
    Wondering which labs how'd increase and if your ANCA was positive or negative.
    In the midst of...
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    I'm in central NY, so the list isn't much help...

    I'm in central NY, so the list isn't much help locally.
    The hemotologist I saw today wants to check for a slow bleed in my intestinal tract. I figured there would be obvious signs of something...
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    Can't get him to agree it's a flare, but at least...

    Can't get him to agree it's a flare, but at least he agreed to send me to hematologist. Hemoglobin down to 7.6 and ferritin at 2.9...going tomorrow for iron infusion. Will ask them to check my...
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    Need to vent...Dr finally calls back and says...

    Need to vent...Dr finally calls back and says everything looks ok. 😕
    I ask about my h&h and he says "well, your at 8, I guess that's low. You felt better when you got iron last time, yes?" I said...
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    I took your comments to heart and had to admit...

    I took your comments to heart and had to admit that I am not as persistent as I should be when it comes to my own health. I tend to think that as long as I am upright and kicking then I am fine. I...
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    Question for you, did you have a lot of drainage...

    Question for you, did you have a lot of drainage with flare or just inflammation? I have almost no drainage this time but my ears and sinuses are all swollen.

    Sent from my SM-N900V using Tapatalk
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    I finally got in to see the ENT my insurance...

    I finally got in to see the ENT my insurance approved in July (referred last October ) and I only made it to the resident, never got to see the dr because "if you have Wegener's, there's nothing we...
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    Thank you! We've only been working together for...

    Thank you! We've only been working together for a year (he dx me last Sept) so I am giving him the benefit of the doubt for now. We are getting to know each other and that is helping with...
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    Thanks, Pete! I already eat a very iron rich...

    Thanks, Pete! I already eat a very iron rich diet. I am thallassemic and have battled anemia my entire life but only needed to turn to supplements on occasion (like pregnancy ). It's just been...
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    He seems to think it is just allergies causing...

    He seems to think it is just allergies causing the inflammation. [emoji53]
    Antihistamines don't help though, only motrin.

    Sent from my SM-N900V using Tapatalk
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    I laid it all out at my appointment, he said to...

    I laid it all out at my appointment, he said to wait and see what the blood work says. My lungs still sound clear and I'm not coughing at all, thank goodness!
    The Hemoglobin is way down since last...
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    When a flare is not a flare...

    I'm on 10 MG prednisone and 1500 cellcept and have been experiencing minor crusting and moderate to severe eye/sinus/facial/joint/head pain lately so I thought I might be having my first flare since...
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    Reviving this thread to see if anyone has more...

    Reviving this thread to see if anyone has more information. :)
    I just had this test done (4 weeks post last rituxan treatment) and the results came back all zeros. No cd19 b cells and no cd20 b...
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    Hey there! Thought I would check in. I'm on week...

    Hey there! Thought I would check in. I'm on week 5 of treatment. I had a little setback in the form of sinus infection. My rhuemy prescribed antibiotic and while on it, I caught a virus that was...
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    Very judgmental post, murmur. I am at the...

    Very judgmental post, murmur.
    I am at the point where eating healthy is the only thing I can do right now along with taking meds and going to the doc. Sleep and a normal O2 rate are luxuries I...
  19. Thread: Illness bingo!

    by newbie
    Replies
    25
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    4,360

    How about "at least it's not cancer." When did...

    How about "at least it's not cancer."
    When did cancer become the only thing that can kill us? I just received confirmation of my dx on Friday and have heard this several times already. How do you...
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    Thank you, everyone! They've done urine and...

    Thank you, everyone!
    They've done urine and blood several times. I have tried making sense of it, but it is difficult. My sed rate was only 17 and my most recent urine seemed better than the...
  21. Replies
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    Newbie with lung tumor

    Hello everyone.

    I am in the CNY area and have recently been diagnosed with Wegener's GPA. The dx is not complete because they cannot get to the tumor in my lung to get a biopsy of it. It is in a...
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