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Thread: Hi From Oz

  1. #21
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    Hi Mark,glad you found this group but sorry you had to. By the signs of it sure sounds like wg. I also have nodules in my lungs. They tried to do 2 needle biopsies but they could not get enough tissue to confirm it so I had to have a partial right middle lobectomy which came back positive. I was put on cytoxin and pred and bactim for 6 months before I went into remission. I am one of those who can not tolerate meds so I have been on 5 mg pred for about 4 1/2 years now and they consider me in remission. I think the pains you are having from the reduction might be due to wg being active. Pred seems to hide issues. I would mention it to your dr. and maybe he will raise it again. Best of luck to you and keep us updated.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Quote Originally Posted by Mark76 View Post
    Since reducing even from 25mg to 10 Ive noticed pain return. Is it possible its a rebound effect of pred? Yeah not entirely sure why he wants me to reduce before the repeat scan...I see him next week and if biopsy proves weg he wants to start me on methotrexate...is the prognosis good? I must admit im a little scared especially after reading lots on internet.
    Reducing prednisone can, all by itself, cause many problems including various pains and muscle cramps. Reducing it can also allow issues to return, which the prednisone had been suppressing. It's only a guess which is happening.

    The odds are way in your favor with proper treatment. Timing is the important part. Many people spend years being treated for incorrect diagnosis, which probably helps to control their Wegener's, but still allows a lot of damage like kaysee mentioned. Always keep in mind that you are your health care manager. You need to learn as much as your brain can hold, and use that knowledge as your guide.

  3. #23
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    If you have to have a lung biopsy make sure that the person that does it is experienced and not someone in training. I had a needle biopsy and I am not sure how they determine the best method of getting to the tissue but worth asking.

    I later found out out I did not need the fool biopsy because my CANCA and Pr3 were positive.

    I also ended up with a chest tube but that was not too uncomfortable

    take care

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    I have read a fair bit on wg like im sure most of you have. One thing that comes up a lot is about obtaining a culture. Is it possible to obtain a culture without surgery (fess)? And if it turns out to be an infection eg staph with treatment with correct antibiotics does the wg resolve or not?

    Sent from my SM-G900I using Tapatalk

  5. #25
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    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 esophagus, and so I consider it exempt from being on one side of the body or another. I also have a lot of nasal congestion in both nostrils but my right side is always a little worse. I had an orbital pseudotumor as well, which was above my right eye, and my right ear tends to have more problems than my left.

    As others have said, only your doctor can diagnose you, but it sounds like you're doing all of the right things in seeing your specialists and following through with tests. I do believe, at least for me, that Wegs can prefer one side of the body to another. I've had symptoms of this for about 10 years now (WOW - hadn't done the math until now, I've hit a milestone!) so I've had plenty of time to develop symptoms in various places. I don't think your symptoms being on just one side of the body really means too much. If you do have Wegs, your one-sided version would be just another beautiful butterfly wing pattern in our little group of natural wonders. It's a much nicer way to visualize the varied way we all experience Wegs, in my opinion.

    Good luck to you with your biopsy and keep us posted!
    Diagnosed October 2012

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    Welcome, Mark. People have given a lot of good advice. I'd like to chime in with my own experience on biopsies, which won't be the same as everyone's.. I think since one side of your sinuses is seriously inflamed, it would be beneficial to go for a sinus biopsy, since as Michelle said, it is not a difficult or very painful procedure, and doesn't have the possible complications you mentioned, nor any time in the hospital.. That's how I was diagnosed, right in my ENT's examining chair, a little bleeding and pain, but no big deal. Then, if that is positive, you will know, and if it is negative, they will still want to consider a lung biopsy, since sinus biopsies are not always conclusive. And others on here have mentioned biopsy samples taken from the gums, skin, or any other area that appears to be affected. Good luck, and keep us posted!
    Anne, dx'ed April 2011

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    Good advice I think ill suggest that

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    Mark, a culture can be obtained anywhere in the body the WG is presenting itself. Avoiding surgery, on the lungs, is predicated on the usefulness of the samples obtained in gums, nasal, etc. I had the lung surgery; it wasn't painful until afterwards when I couldn't move my arm very well as the surgeons had thrown it over my head in order to get to the spot of surgery! As for getting antibiotics, they only work on the bacteria, they do not work on WG. Docs gave me heavy duty antibiotics thinking I had an infection like pneumonia or similar. They did nothing to the WG at all. Best to you, follow protocols & you will get to where you want to be.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  9. #29
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    Quote Originally Posted by Middlesista View Post
    I later found out out I did not need the fool biopsy because my CANCA and Pr3 were positive.

    I also ended up with a chest tube but that was not too uncomfortable
    Sissy, if I recall correctly you had something called a needle biopsy? And it resulted in much bleeding?

    My lung biopsy was done with a camera down my throat, and a tool on the end which removed the tissue (I was sound asleep at the time). It also resulted in bleeding in my lung, but caused no real issue. In hindsight, I would not have done it since there was already a Weg positive biopsy of gum tissue. They did the lung biopsy to rule out cancer, which would most likely have been indicated in blood tests. The lung biopsy came back as Wegener's. The lung nodules healed very quickly on 150 mg cytoxin and 80 mg prednisone.

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    Quote Originally Posted by Birdie View Post
    Sissy, if I recall correctly you had something called a needle biopsy? And it resulted in much bleeding? .
    Birdie - Yes, needle biopsy done with conscious sedation so I was awake and all was well till they accidentally cut into my intercoastal artery and they had to put a coil in the bleed but not until after I bled into my pleural space and thought I would not make it -pretty intense with severe chest pan and not being able to breathe. They thought they took care of the problem and sent me home but I later was re-admitted with over 1 liter of blood in my pleural space requiring chest tube and home oxygen Granted - this does not happen to everyone- but it is why I suggest to folks to ask about lung biopsy and if there is another way to make the diagnosis I would look in that direction

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