User Tag List

Likes Likes:  0
Page 1 of 4 123 ... LastLast
Results 1 to 10 of 31

Thread: Newly diagnosed with wegeners

  1. #1
    Join Date
    Apr 2015
    Posts
    18
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Newly diagnosed with wegeners

    hi folks
    I have just been tentatively diagnosed with wegeners, the rheumatologist I am seeing wants to do a nasal/sinus biopsy to make certain, but he is pretty sure it will turn up positive.
    it all started at the beginning of October last year with pancreatitis, this put me in hospital for a month and off work for 3 months, however there was no cause found, no gallstones or alcohol so they put it down to a virus that I may have picked up, this was quickly followed by a sinus infection then an ear infection then scleritis of the eyes, this put me back in hospital for a further 2 weeks, this was about 8 weeks ago, it was mentioned at the time that it could be an auto-immune disease, nothing more was mentioned about it, then about 3 weeks ago I had to go and see my diabetes nurse who went through my recent run of bad luck and mentioned I have vasculitis to which I replied no I don't, it turns out that the hospital ran the tests but failed to notify anyone of the results, my normal GP was not happy about this and sent me to the rheumatologist who I must say has bent over backwards to help me, he has spent the last day trying to get me in for either a CT or biopsy of the nose ASAP.
    I am currently on 20mg of prednisolone a day, any less and my eyes start to play up again, the rheumatologist wants me off them because of my diabetes.
    I have done nothing but read up on this disease over the last week, lots to take in.

  2. #2
    Join Date
    Jul 2014
    Location
    Australia
    Posts
    28
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Good Luck, I hope you get a diagnosis no matter what the result. If it is WG don't panic treatment is available and you will be able to live a relatively normal life.

  3. #3
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,370
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Andy,

    Welcome to the forum. You'll find a lot of great folks on here to give you support and share the GPA experience. This forum is based in Australia and you'll soon make new friends with your fellow Aussie weggies. The rest of us talk a little funny, but we're here to help as well.

    Hope you get a firm diagnosis soon so you can get effective treatment.

    Good luck!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  4. #4
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,751
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Melbourne Andy and welcome.

    Is this Melbourne Australia or Melbourne Florida, or maybe the Melbourne doesn't mean anything at all.

    You certainly have been having some issues lately I hope you have a good rheumatologist and ENT.

    Sinus biopsies are, more often than not, negative or inconclusive, but hopefully yours shows something.
    It is a relief to get an official diagnosis, even if it has to be WG. It's the not knowing part that is the worst.

    It certainly is a lot to take in, so don't be afraid to ask any questions that you need to. We are not medical specialists, so you should also speak to them, but we are living through it each day and although symptoms can be totally different from one person to the next, someone may have an answer for you.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  5. #5
    Join Date
    Sep 2014
    Location
    League City Texas
    Posts
    141
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome Melbourne Andy,
    You will find lots of support here. Some on here have a lot of experience with this disease and have good advice to offer. It took two years for my diagnosis. I had similar problems to yours - ear infections, scleritis of the eyes, unknown infection that hospitalized me, skin rash, sinus infections, etc. I was finally sent to a rheumatologist who was familiar with WG and diagnosed me. By that time I had kidney involvement. I wish you the best of luck. Once diagnosed there are some good treatments.
    Karen; dx'ed April 2014

  6. #6
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome, Andy! I can offer some encouragement about nasal biopsies in that mine was conclusive for WG, even though I'm sure Michelle is right that they often aren't. There could be some factor in your individual case, like whether it's possible to get a good sample from your particular nose and sinus area. I'm guessing it would have to be precisely from an area where the disease activity is present and readable, to which a good ENT might have visual clues. If it is negative or inconclusive, a good rheumy with WG experience may be able to diagnose you based on symptoms and the hospital tests that came back indicating vasculitis. The important thing is to get treatment started ASAP.

    I'm glad you are here, and if you have WG, I hope you find this forum to be as much of a lifesaver, physically, mentally, and emotionally, as I have since the day I was diagnosed 4 years ago. It is full of wonderful, caring, and helpful people, and you won't feel alone with the disease.
    Anne, dx'ed April 2011

  7. #7
    Join Date
    Jul 2014
    Posts
    294
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Andy, you've sure been through a lot. I hope you get a conclusive diagnosis and that you're set on an effective course of treatment right away.

    I want to share a thought about the possible nasal biopsy. My doctor ordered one, and I went along with it even though another doctor questioned the need for it. In retrospect, I believe (in my case) that it was unnecessary and caused needless discomfort and expense. I also think it contributed to the long term damage I have in my nasal passages by creating additional scarring. The biopsy was negative, but I was still diagnosed with WG based on the lab evidence. The lab evidence was already available and was convincing for WG before the biopsy. So... my treatment would have been the same regardless of the biopsy. Your team may have a good reason for wanting a biopsy; I would just be sure to ask about it before agreeing.

    Best of luck.

  8. #8
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    For whatever it's worth, my nasal biopsy was quick, not very uncomfortable, not expensive, and able to be done on-the-spot, unplanned in advance, right in the chair I was already sitting in, with a local anesthetic. I don't think it caused any damage or scarring. The nasal and sinus passages are pretty complicated, so I would never suggest it should be that easy for everyone. If I understood it correctly, my ENT took scrapings from the bony part of my septum where a perforation had occurred, and a small amount of whatever tissue was nearby that looked likely to have disease activity. If he didn't have to go any farther than my septum for a sample, that could explain why it was easier for me than for some others. If you do get a biopsy, I hope it goes smoothly and is conclusive either way. You could get a second opinion as to whether the biopsy is necessary, or whether maybe the current evidence including the hospital test results might be enough. Or just tell your current rheumy what was said on here and see what he says. And I just noticed you said a CT scan OR a nasal biopsy, so he might go for the scan, if he thinks that would show enough to form a conclusion.
    Anne, dx'ed April 2011

  9. #9
    Join Date
    Jul 2014
    Posts
    294
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Right, my experience was completely different. My biopsy was done under general anesthesia, which ups the ante in terms of cost and risk. In my case the immediate aftermath was very unpleasant, and it turned out to make no difference in diagnosis or treatment. It's the only thing about my treatment that I wish I could go back and "undo"; overall I have gotten excellent care. Andy, I didn't mean to freak you out about the possible biopsy, but based on my experience it's something you might want to ask about.

  10. #10
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,370
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    I had a nasal biopsy and a bronchoscopy done back-to-back. I was in the twilight zone for the procedures. As I faded out, I told the docs that whoever got the diagnosable sample got a steak dinner. The ENT got the dinner.

    I had no issues following these procedures.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

Page 1 of 4 123 ... LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •