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Thread: Me too - New GPA diagnosis. High Anca titer

  1. #1
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    Default Me too - New GPA diagnosis. High Anca titer

    Hi everyone,
    Here's my quick story.
    In May 2016 I started having ear problems... Saw pcp, then ENT - no one could figure out what was causing so much fluid and pain. They tried antibiotics, yeast meds, ear tubes, even prednisone (which helped a bit) / 3 months later blood tests showed high inflammation. Further blood tests tested positive for ANCA.
    A week ago, on Aug 1 I saw Mass General rheumatology dr's - leading experts an hour from my home! Thk you God!
    They started me on 60 mg prednisone that day. ran ct scans, more blood and urine tests. My kidneys are not affected or damaged. But I have 5 granulomas in my lungs. and by Friday Aug 5 I was having a lung biopsy. my Anca titer came in over 1100! (Also 1:80) they told me I have extremely active disease but I'm limited GPA and an early diagnosis. Yesterday Monday Aug 8 I had my first Rituxan infusion. All within 1 week of diagnosis. I've lost some hearing and have some breathing problems, and am short of breath/ tired/ sweaty just folding laundry.
    Anyone else have high Anca Titers like that. They said over 20 is positive for active disease. I have over 1100! I feel like I'm in excellent medical hands though and so happy to have a diagnosis that is treatable. Im glad I wasn't born 50 years earlier. Crazy different outcomes back then!
    My faith and family are great support... Anxiety meds helping too. Rituxan infusion went well. Next one is Aug 25. MGH (mass genl Hosp) in Boston has been awesome in pushing for my speedy treatment.
    Just wanted to reach out and learn more from everyone who's been on this journey for more than a week. I'm happy to answer any questions about my case.
    God Bless,
    Gab
    Last edited by Gab122; 08-09-2016 at 08:05 PM. Reason: Typo

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    Hi Gab and welcome to the forum. The best place for you to learn all about your GPA diagnosis.
    I'm so sorry that you have to be here but glad you found us.

    Sounds like your specialists know exactly what to do.

    We don't really like the term limited. GPA is GPA, you either have it or you don't.
    They use the term limited if the GPA is limited to just your respiratory system and nothing else, unfortunately it doesn't mean that it is any less of a problem than those with Kidney or Liver, Stomach, Brain etc.

    In the search box at the top of the screen you can place a word (ie. rituxan) and you will find all threads that have this word in it.

    Welcome again.
    Take care of yourself and .........
    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

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    Hello Gab!!

    Your presentation sounds a lot like mine. I had an ear infection that wouldn't respond to the usual treatment. Had the eardrum lanced twice with no good result. Felt like crap. Tired all the time. Lost my appetite (and 25 pounds). After a week in the hospital, I was also diagnosed with "limited Wegener's" affecting my ears and lungs.

    Finding a specialist at Cleveland Clinic was a godsend to me. She got me into remission and has kept me there for nearly four years.

    I'm fortunate. I'm leading my pre-wegs life in retirement. I do all the things I need to do and almost all of what I want to do.

    Hope you're as fortunate as I. 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

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    This case might interest you:

    A YOUNG LADY PRESENTED WITH LIMITED PULMONARY WEGENER'S GRANULOMATOSIS

    Over six years ago I had extremely high ANCA scores according to Mayo clinic. Like way off the charts I guess.
    Last edited by drz; 08-10-2016 at 05:04 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Hi Gab! I have also seen docs at MGH - we must not be too far from each other! sounds like you are in good hands. My hearing, vision and lungs are affected First diagnosed in Nov of 2015 but hearing issues started 3 years prior but no diagnosis made at that time. My CANCA and inflammatory markers were up there - progress with Rituxin and Prednisone.

    Life goes on, things will improve as everyone has said- make yourself and your health a priority as much as possible.

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    Hi middlesista, and everyone who wrote! I'm in southern NH - about an hour north of Boston. My care/treatment decisions are under MGH rheumatology but I've seen Dr. Niles office (MGH nephrology for infusion) and Dr. de Venicia at Mass Eye Ear too. My symptoms are experienced in tight breathing/cough, ear pain, fullness and hearing loss, sinus drainage, and easily breathless with minimal exertion. I also sweat extra/easily... Is that GPA, or maybe because I'm perimenopausal?
    Have most of you experienced some improvements within a couple weeks of treatment with pred and ritux? I'm hoping. Dr. Niles thought my hearing would take longer to return/respond than my lungs. Any info is appreciated. What dosage of pred did you start on? I'm on 60 but wondering if higher would be more helpful.
    Thx
    Gabrielle

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    Hi Pete, I've read some helpful info on the Cleveland clinic website, figured they must be leaders in this "industry". How quickly after treatment did you feel better? Were you on pred and ritux? How much pred? I'm on 60 daily and wondering if more would help me feel better. I almost was in the clinical study (shorter pred / more ritux) but because ER had started me on pred before I started with MGH (back to back dosages) I didn't qualify.
    I'm so happy to hear you feel pre-weg mostly! I hope for that. I have a 12 year old that needs more than I currently have to give. My hub and daughter (and extended fam) have been great but I want to contribute more than I am.
    How quickly did meds get you back to normal? Also how often do you have blood work to watch the disease activity?
    Thx
    Gabrielle (so NH)

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    Gabrielle, don't be in a hurry for a quick fix. This process takes time & patience. Most of us, including most docs, work on a time line of about 5-6 weeks for the drugs of use to take full effects. Your pred will reduce and so will the effects of it. Your strength will return slowly...exercise such as what Pete recommends works well...just gotta do it. This disease does NOT go away...but it can be dealt with effectively returning our bodies to pre-WG status, mostly! Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Welcome Gab, I'm from South of Boston but have Doctors at Boston Medical Center / BU. I was diagnosed in 09 and treated aggressively with Cytoxin back then for nine months and was declared in remission on June 30, 2010 by Dr. Stone at MGH. I remain there with only a little scare flare in 2014. Dr. Stone I have been told has gone full time into research. Hang in there, life will get better. Its getting to the point now where we have enough Weggies in New England to have a convention. Maybe someday. Best to you,
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    Hi Don,
    I'll try to be patient.
    Btw- you said "exercise such as what Pete recommends works well...just gotta do it.". I reread Petes post and he didn't mention exercise. Shd I be exercising? I thought working out would be more draining than helpful. Maybe you meant an 'exercise' in patience? Gab

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