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  1. When I was first hospitalized they didn't know...

    When I was first hospitalized they didn't know what was wrong with me. I had more tests done than I cared for. I had lung biopsy, scrapings taken from my inner ears and then a mastoidectomy. They...
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    That's wonderful news. Glad that one year has...

    That's wonderful news. Glad that one year has made a positive difference for you and hope it continues. :)
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    Hi Lovinlife, Sorry you're experiencing a flare...

    Hi Lovinlife,
    Sorry you're experiencing a flare so soon after reducing your meds. Cytoxin usually works pretty fast at bringing the disease under control. Your circumstance sounds a lot like my...
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    The weather has started to get warmer and hubby...

    The weather has started to get warmer and hubby and I are walking again. Between the walking and staying busy physically and mentally, I find that I'm ok for a few days, then I crash. I'm...
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    I agree with your dosage being kind of low. My...

    I agree with your dosage being kind of low. My largest dose was 70mgs when I was in the hospital . By the time I left I was on 60mgs. I can tell you that I was so wound up that I would go two days...
  6. Thread: wiki wegs

    by Jaypfei
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    Yes, the pics are scary, especially if you are...

    Yes, the pics are scary, especially if you are newly dx'd and looking for information online. My saddle nose isn't nearly that bad. I'm going to presume all the pics are worse case scenario if not...
  7. Thread: Waxing??

    by Jaypfei
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    I got a good chuckle from Phil's post. He's...

    I got a good chuckle from Phil's post. He's still giving us laughs.
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    I have less than 90 days left of a two year...

    I have less than 90 days left of a two year dosing of Forteo. I take a 20mcg shot every day. I first took once a week Fosamax but couldn't deal with the upset stomach issues that it caused. Then...
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    Definitely echo Pete's thoughts. I'm in a drug...

    Definitely echo Pete's thoughts. I'm in a drug induced remission as well since last May. I'm not sure that I will ever feel as I did before Dx's, or for that matter look as I did. The disease...
  10. Thread: Nose pain

    by Jaypfei
    Replies
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    I'm real sorry that you're having pain. Is the...

    I'm real sorry that you're having pain. Is the pain actually in the nose, or is it more like headache? When my disease was active I would get excruciating sinus headaches that rivaled migraines. ...
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    Oh thank goodness Anne! We're back to ourselves. ...

    Oh thank goodness Anne! We're back to ourselves. Big thanks to Andrew.
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    I was reading this thread and I don't know if...

    I was reading this thread and I don't know if there is a glitch in the system, but my photo is in Annekat response. What's up with that???? Andrew......
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    Lol! Kind of gives me an idea of how to use...

    Lol! Kind of gives me an idea of how to use leftover polymer clay. ��
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    Hey Hannah Welcome to the forum. Can...

    Hey Hannah

    Welcome to the forum. Can certainly relate to the liver issues. I'm one of the unfortunate few that can not tolerate methotrexate or Imuran. Both cause my liver enzymes to go through...
  15. Thread: SuperBowl 2015

    by Jaypfei
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    1,273

    As a Green Bay Packer fan by marriage, I was kind...

    As a Green Bay Packer fan by marriage, I was kind of hoping we could pull off a win and go to Super Bowl. But hey, one less game means time to re-group, heal our injuries and put a plan together for...
  16. Thread: Alive Day

    by Jaypfei
    Replies
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    I wasn't near death, but according to...

    I wasn't near death, but according to Pulmonologist I was in pretty bad shape. My date is fast approaching....February 27, 2012. I'd rather wait till May and celebrate ONE year of drug induced...
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    I'm living life and being happy. I pop in from...

    I'm living life and being happy. I pop in from time to time to read posts, sometimes I answer. But I stay pretty busy outside the group. Wishing everyone a great New Year! :)
  18. Lol! Yep. Loved the vampire sequence.

    Lol! Yep. Loved the vampire sequence.
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    I get a sore throat frequently, but then I've had...

    I get a sore throat frequently, but then I've had issues with strep long before Dx's of GPA. Yes, I bring up mucus and a bit of blood which I've learned is coming from the craters in my tonsils. ...
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    I don't blame you. I don't give out any...

    I don't blame you. I don't give out any sensitive info over the phone. More than likely it was a scammer. Another big scam with identity theft is getting your medical info to use your health...
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    My personal experience is yes. I went back to...

    My personal experience is yes. I went back to work two weeks after being dx'd and getting out of the hospital. It was like clockwork; every 6 mos. I would relapse. Finally, August of last year when...
  22. Thread: Ear clogged

    by Jaypfei
    Replies
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    1,193

    I had issues a couple of weeks ago. I had cold...

    I had issues a couple of weeks ago. I had cold like symptoms and every time I blew my nose I would have sharp pain in my left ear. Of course I was worried and wondering if the disease was...
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    I don't voluntarily offer up information about my...

    I don't voluntarily offer up information about my condition anymore. I too have had a few people give me a frightened high brow when mentioning AI. Having a cochlear BAHA I get a lot of questions. ...
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    I most definitely don't have The gene as I sweat...

    I most definitely don't have The gene as I sweat like a mule and would love nothing more than to find a deodorant that actually works. :)
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    Saddle nose Hearing Loss Lung involvement...

    Saddle nose
    Hearing Loss
    Lung involvement
    Vicious cycle
    Ignorant doctors
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