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1. • CommentAuthorsunshineannie
   • CommentTimeJul 28th 2009

    # 1Report Post
   Hello all!! I am new to the sight. I was dx w/ "limited" WG in 1997 and had a pretty easy go of things until I got pregnant back in 04, and had my son in 05. Life has been very difficult since. My illness of course flared back up and this time attacked (and is still attacking) my trachea. It gets very inflammed, to the point where I have had an estimated 5 ER visits, and 10-12 lazar bronchs to widen it back up....this proves only as a temporary fix and I am now struggling again with this issue, extreme fatigue, and slight RA pain. All of this and no health insurance due to losing my job over all of this.....at any rate, I would be very interested in hearing feedback from anyone with this exact issue, having WG-how you manage your daily routine, any kind of helpful hints, anything. I would actually be very interested in also hearing from anyone with WG, please. My doctor is great, but only another patient truly knows what's going on and can share.
   
   Thanks so much and God bless!
2. • CommentAuthorsherrylynn
   • CommentTimeAug 20th 2009

    # 2Report Post
   I don't know that I can offer much, but my father had WG back in 1988. His lungs were affected.Luckily I worked for a great internist/diagnostician who had him diagnosed in 2 weeks. The literature in the medical library at that time said it was often misdiagnosed because it mimics so many other diseases. If not diagnosed properly and timely folks would be in trouble. At any rate, he was put on a chemotherapeutic drug (name escapes me) along with Prednisone and Septra (an antibiotic commonly given for UTI's --urinary track infections). He eventually stopped the Prednisone and chemo drug (it did not make him sick as those drugs usually do). He remained on Septra for YEARS. (8 or more) He periodically had an ANCA blood test and saw his pulmonologist. Maybe he was lucky or an unusual case , but he went into remission and never came out of it. He eventually went off the Septra and still remained O.K. (Unfortunately he was diagnosed with bladder cancer and died in 2006) Make sure you have a top notch doctor and seek a second opinion if necessary. It can't hurt and it's your right. I wish you all the best and hope things turn around for you. You sound like you must be very young. Take good care of yourself and remain positive! Good Luck.
3. • CommentAuthorsewgreen
   • CommentTimeDec 23rd 2009

    # 3Report Post
   I have had symptoms for Wegener's for 18 months however it has not formally been diagnosed even though I have had numerous tests of varying kinds. The symptoms have ranged from joint aches and pains, terrible cough, both voluntary and involuntary, constant runny nose, one case of swelling, one night of fever, several days of a rash, head congestion, chest congestion, shortness of breath, tracheal issues, hoarseness and I am sure many others. Throughout this past 18 months it has not normally been debilitatig but you always knew something was not right. For the last two months I have improved so much so that I am thinking of not going through with a second scheduled bronchoscopy and another tracheal-related procedure. I am probably 90% better, I am not on any medication and have not been for three months. All of my Doctors believe it is most likely Wegener's. CAN WEGENER'S GO INTO REMISSION ON IT'S OWN?