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  1. Thread: Just Diagnosed

    by Rodger
    Replies
    37
    Views
    3,379

    Hi all bacf to the forum after a long hiatus. My...

    Hi all bacf to the forum after a long hiatus. My first flare up after diagnosis involved my ears. Get thee to an ENT! I got tubes which alleviated the fluid and pressure, but the meds were required...
  2. So did I. I found this group much more responsive...

    So did I. I found this group much more responsive to inquiries that JHU in the U.S.

    Rodger
  3. Replies
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    3,028

    Congrats Luce. I saw my rheumatogist today. He...

    Congrats Luce. I saw my rheumatogist today. He didn't quote (he does like to do say specially, so I don't obsess. I ask about every other time) my ANCA or CRP levels but said I'm getting closer to...
  4. Thread: Rytuxan?

    by Rodger
    Replies
    1
    Views
    935

    Rytuxan?

    Not sure if I've got my spelling quite right but my rheumy has started discussing Rytuxan as an option. Do any members have experience to share?

    Thanks Rodger
  5. Replies
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    2,257

    Hey folks, I've been really tied up for the last...

    Hey folks, I've been really tied up for the last month so I'm just getting caught up with you all. I hope 2009 is going well.

    Supersticky mucus--yes. I rely heavily on the irrigation--three times...
  6. Thread: Happy holidays

    by Rodger
    Replies
    4
    Views
    1,016

    Happy holidays

    Regardless of faith or believe, I wish everyone a happy season! Here's to better health and understanding of our wonderful :rolleyes: common link in 2009!
  7. My 9 months or so of what my rheumy referred to...

    My 9 months or so of what my rheumy referred to as clinical remission would still have days of feeling like crap. I always could count on foot pain or shoulder pain at least a few days a week.

    I...
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    Glad the sudafed worked and you were able to bear...

    Glad the sudafed worked and you were able to bear the flight. :)
  9. Replies
    138
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    11,402

    The Ponaris, which I mention is a drop not a gel....

    The Ponaris, which I mention is a drop not a gel. I get from Walgreen's but also had luck with my grocey store pharmacy. They usually do not stock it, but can order. Tip: have them order enough so...
  10. Thread: New to the Club

    by Rodger
    Replies
    10
    Views
    1,972

    update to my ear issue

    No new infection, but my blood work wasn't good either. My rheumy tripled my pred to 30 mg every other day and boosted my Cytoxan by another 25 mg. It was disappointing news, but know I'm still look...
  11. Thread: New to the Club

    by Rodger
    Replies
    10
    Views
    1,972

    I saw my secondary ENT at Georgetown Medical...

    I saw my secondary ENT at Georgetown Medical School on Monday. He believes my ear drainage is consistent with WG as well. He order lab cultures and put me on 10 days of Cipro and Cipro drops just in...
  12. Replies
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    4,153

    It seems like I'm joining the thread midway, but...

    It seems like I'm joining the thread midway, but my rheumy was very specific about stepping down by 2.5 mg at time over a number of weeks. Of course the higher the dose the longer it will take....
  13. Replies
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    1,771

    I know they received the sample. I did have a URL...

    I know they received the sample. I did have a URL where I could track study updates, but an e-mail upgrade means I can no longer locate the e-mail. I look at it this way, my little contribution to...
  14. Replies
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    11,402

    Yes, to the moisturizer! I forgot to mention that...

    Yes, to the moisturizer! I forgot to mention that my ENT recommended Ponaris which is more of an oil than a gel that was developed to protect the first astronauts' sinuses from drying out in space....
  15. Replies
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    1,556

    Actually I'm very pleased with my doctor, and...

    Actually I'm very pleased with my doctor, and over all my progress has been great. I was never as sick as some of the people on the forum. He trained at Georgetown under a rheumatologist who studied...
  16. Replies
    138
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    11,402

    Forgive me if duplicate posts show up. I was...

    Forgive me if duplicate posts show up. I was interrupted will writing an earlier one.

    I use the NeilMed version 3 times a day in each nostril. Although I use my own cocktail rather than the...
  17. Replies
    8
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    1,556

    It's look we're relative neighbors. You in...

    It's look we're relative neighbors. You in Maryland and me in Northern Virginia. I haven't had to go to JHU yet, my rheumatologist here in town has been able to manage things. I'm his 13th patient in...
  18. Thread: New to the site

    by Rodger
    Replies
    25
    Views
    3,247

    I also had teeth and gum problems in the...

    I also had teeth and gum problems in the beginning before I was diagnosed: numbness in the roof of my mouth, and before things got better my teeth loosen and shifted. Thank god the folks never went...
  19. Thread: New to the Club

    by Rodger
    Replies
    10
    Views
    1,972

    Jola, I haven't had to fly since the tubes went...

    Jola, I haven't had to fly since the tubes went in, but my ENT has not cautioned me against it. I actually had to face a flight from Washington to Hawaii for business and pleasure just as the fluid...
  20. Thread: New to the Club

    by Rodger
    Replies
    10
    Views
    1,972

    I was diagnosed in Sept 2006 with primarily sinus...

    I was diagnosed in Sept 2006 with primarily sinus symptoms. I have just had my first real flare up, signaled by fluid in my ears and now pretty constant tinnitus. I had to have tubes put in to...
  21. Replies
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    905

    Hey Sue, I hope you are doing well. Since it did...

    Hey Sue, I hope you are doing well. Since it did not appear you had any replies, I would strongly advise you to push for a rheumatology consult if it hasn't happened by now. Lot's of times, you need...
  22. Thread: Eastern USA?

    by Rodger
    Replies
    75
    Views
    14,734

    I live in the Virginia Suburbs of DC with...

    I live in the Virginia Suburbs of DC with relatives in Eastern NC. also I'll be in Orlando in January on business. Hitting and common locales?

    Rodger
  23. Replies
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    1,771

    WG genetic study

    Last post of the day.

    Back in the summer I participated in the following study:

    Identification of Novel Wegener’s Granulomatosis Susceptibility Genes

    Investigator:
    Katherine A....
  24. Replies
    3
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    806

    WG makes the news

    I thought this may be of interest. My wife found this story on the ABC News website this week. It's the highest profile coverage we've ever seen about WG.

    Runny Nose Was First Sign of Deadly...
  25. Replies
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    993

    Symptoms similar to middle ear infection?

    I was wondering if anyone else in the Forum has had or gets symptoms like a middle ear infection. Since August I have had fluid in one or both ears, but no positive lab cultures pointing to anything...
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