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  1. Thread: Just an update

    by jlove
    Replies
    14
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    1,083

    Victor, you must be so proud of your...

    Victor, you must be so proud of your accomplishment! If not, you should be! Also wanted to comment on your avatar, I recognize a familiar face there in Dr. Merkel. Is that a painting of him? Or you?...
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    Hi Hege! I'm a little late to this party but I...

    Hi Hege! I'm a little late to this party but I wanted to hop on the welcome train too. Receiving the GPA diagnosis can be jarring at first but, like others have said, you will find plenty of support...
  3. Thank you all for your advice! I have to look...

    Thank you all for your advice! I have to look more into Obamacare and Healthcare Navigators. I think, as you said Anne, it's time for me to leave my current job. I'm thinking about jobs where I...
  4. Need some love from my fellow Weggies (& advice!)

    Two weeks before my 26th birthday (which was about 2 weeks ago), my mom passed away from her battle with cancer. She told me about her cancer (of the lung) almost exactly a year before the day she...
  5. Replies
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    I guess what I really meant to say was I think...

    I guess what I really meant to say was I think it's good to always talk with your rheumatologist about the lesser symptoms. Also, be open to the idea that some of what you notice may be nothing after...
  6. Hi Hope! I just read through your posts. I'm...

    Hi Hope! I just read through your posts. I'm sorry you are having a difficult time figuring out what's going on. I remember being in that spot, where you know something is happening and you just...
  7. Replies
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    I have definitely experienced what you're...

    I have definitely experienced what you're describing. I went undiagnosed for a while because I was ANCA negative and only showed two criteria for Wegener's. Toward the end of my senior year of...
  8. Thread: VF Webinar

    by jlove
    Replies
    2
    Views
    274

    This is the link for anyone who is looking: ...

    This is the link for anyone who is looking:

    Vasculitis Foundation Educational Webinar: Insight into Your Lung Tests for Vasculitis
  9. debra, did you ever receive an official...

    debra, did you ever receive an official diagnosis? I read through your posts and it seemed like nothing definitive came from your appointments. I would have asked on your thread but it has been...
  10. Replies
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    Middlesista, in my experience, my rheumatologist...

    Middlesista, in my experience, my rheumatologist takes note of more mild symptoms but doesn't really alter my treatment plan for something like fatigue unless it's in combination with other symptoms....
  11. If your symptoms are rapidly worsening, it could...

    If your symptoms are rapidly worsening, it could be worth it to squeeze in some treatment before your trip to SoCal. My ENT always treated the SGS as a pretty serious matter and more than once...
  12. Vdub, sorry to hear you're dealing with...

    Vdub, sorry to hear you're dealing with subglottic stenosis. Did your ENT give you an estimate about what percentage of your normal airway you're working with? I had mine dilated twice with a laser...
  13. Thread: MTX question

    by jlove
    Replies
    4
    Views
    413

    Hi Tom, I have some Methotrexate experience but I...

    Hi Tom, I have some Methotrexate experience but I was in the pills to injections camp after the MTX pills stopped doing much for me. In my experience, the injections were more effective but they...
  14. Thread: Hi From Oz

    by jlove
    Replies
    140
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    6,178

    Hi Mark, It's hard to know if there was some...

    Hi Mark,

    It's hard to know if there was some placebo effect involved but I felt better about a week after my first Rtx infusion. After about 3 weeks, I notice a lot of improvement and I'm a big...
  15. Replies
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    Hi Lisa - could you ask your rheumatologist to...

    Hi Lisa - could you ask your rheumatologist to talk with Dr. Lee? My rheumatologist has done this for me a few times with other specialists. When it's doctor to doctor contact, they don't have to...
  16. Replies
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    968

    Middlesista, I too tend to fret and consider...

    Middlesista, I too tend to fret and consider myself hyper-vigilant when it comes to my body. I try to separate the emotional aspect of worrying from the action we must perform constantly as...
  17. Thread: Hi From Oz

    by jlove
    Replies
    140
    Views
    6,178

    Hi Mark! I'm chiming in regarding having symptoms...

    Hi Mark! I'm chiming in regarding having symptoms on only one side of your body. The majority of my symptoms are on the right side of my body although I had tracheal stenosis, which is in the...
  18. My ENT also recommended Baby Shampoo in the nasal...

    My ENT also recommended Baby Shampoo in the nasal rinses but I don't think it makes too much of a difference for me as opposed to saline without the shampoo. One thing that's very helpful for me is...
  19. Thread: New Member Here!

    by jlove
    Replies
    21
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    1,607

    Welcome to the forum, Skempins! I am also a 25...

    Welcome to the forum, Skempins! I am also a 25 year-old woman with GPA and I feel your pain when it comes to people not always being understanding.

    In terms of medication, as a few people have...
  20. Thread: Hoarseness

    by jlove
    Replies
    5
    Views
    2,175

    Hi Alhambra! I would recommend Rituximab...

    Hi Alhambra! I would recommend Rituximab personally because I went through a similar experience and didn't have any immunosuppression and I think it would have really helped me. I lost my voice when...
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    Hi Leeza! I'm a patient of Dr. Merkel's and I...

    Hi Leeza! I'm a patient of Dr. Merkel's and I live in Philadelphia. My guess is 11 is a little young to see Dr. Merkel but that's just because CHOP (Children's Hospital of Philadelphia) is right...
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    Hi Nikki, When I switched to methotrexate...

    Hi Nikki,

    When I switched to methotrexate injections, the main thing I experienced was nausea. I did have some intestinal upset and a dry mouth but yours sounds much more intense. I would...
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    Sophie, Do you get cortisone shots often? My ENT...

    Sophie, Do you get cortisone shots often? My ENT said they were an option for me a while ago (maybe 4 years) but at that point I was frightened by the idea. Now I think they might be worth it. I'm...
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    983

    Welcome Sophie! Your English is great! I took 6...

    Welcome Sophie! Your English is great! I took 6 years of French and I don't think I could even begin to explain my Wegeners in your native language. I guess I could begin but it wouldn't be pretty.
    ...
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    1,279

    waiting watching side effects roid rage good...

    waiting
    watching
    side effects
    roid rage
    good days
    bad days

    Some of these are two words but I guess I'm going for key phrases here :)
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