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Thread: Had my sinus biopsy

  1. #11
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    Alysia, I do think that if you ended up with the saddle nose, you probably needed more than just pred and sulfa in the early stages. Plus I think it's generally assumed these days that pred alone, without one of the immunosuppressants, doesn't properly treat Wegs.

    By the time I got my dx and treatment, it was too late, I already had the nose. But, like you, my glasses do a good job of covering it up, and some people have said it looks like a cute little pug nose (slightly upturned like that of a child) and makes me look younger. I think some people haven't noticed it at all, while others have. It could definitely be worse. I know that Sam on here, in the UK, met and married her husband with a saddle nose! She did get it fixed fairly recently.
    Anne, dx'ed April 2011

  2. #12
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    Oct 2010
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    Wanda,
    Good luck to you on your results. Concerning the nausea with mtx, when they had me on it I took the shots once a week and don't remember getting sick to my stomach. I did have pain in my bones for a couple days after the shot. I hope they find the right tx combo for you,sounds like you have alot on your plate health wise.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  3. #13
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    My WG journey started with a sinus infection that wouldn't go away. I got an EMT for the first time and he suggested surgery for a deviated septum and to clean out my maxillary sinuses (they were full of gunk). I thought that I would never have the surgery because I could deal with a little sinusitis here and there, but I started having ear issues as well. One got so bad that he wanted to put a tube in it but it was so inflamed that he didn't think I could tolerate the procedure in office - he wanted to sedate me first. He said that since I would be under he could go ahead and fix my septum and all too. I agreed and we went on and did it.
    During recovery, my nose started producing GIANT granulomas, but we all thought they were just scabs gone wild. After about 3 week or so of pulling out massive scabs (he had never treated WG) I started running a fever. He did the RA, Lyme's, etc. bloodwork looking for something crazy. Then I had joint pain and mentioned all of this to my general Dr. He did the ANCA check and found WG. They insisted I have a bx because of the false positives associated with the ANCA. Since at the time I was only having sinus issues they would bx there. Nothing to bx in kidney or lung.
    I was scheculed for the bx but my new Dr. (rhumi) said that he would check and see if they kept any of the tissue from the surgery and use it instead. They had kept some and it did come back positive. He saved me the bx and some $$. Anyway, long story short, they wanted an ANCA result and a bx result to be sure because the treatment is dangerous and not much fun. But my sinuses were jacked up. If you have no sinus symptoms, I would still be cautious if it came back negative. Have they looked at your kidneys (urine) or lungs yet?

  4. #14
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    I had a lot of blood work done on the 15th and results are not back yet. I called the lab today because I thought it's been a long time and was told everything is done except the ANA that they had to do a "reflex panel" and was going to take 12 days (working days of course) so I now have to wait untl the 3rd of May. I picked up results of last ct of lungs from Aug and have 3 nodules and an 11 mm nodule lesion in my upper right thyroid lobe, they want me to get a thyroid sonography done. There is also a lesion in the medial hepatic lobe and they want an MRI of my liver. I had urine tests done 3 times since January and kidneys seem to be fine. I have an appt. May 1st with pulm/internist so hopefully I can get these other tests done as well. Hanging in there, and i believe things happen for a reason so....we shall see what's next in this journey. Thank you all for your concern, it's nice to be able to commuicate with people who understand what your taking about.

  5. #15
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    I just looked up what "reflex panel" was and it says: The reflex automatically runs additional specific antibody tests included in the panel if the ANA is positive.

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