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Thread: Results of Univ. of Penn visit

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    lovetoswim is offline Registered Member
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    Default Results of Univ. of Penn visit

    Met with the Rheumy who specializes in vasculitis. She couldn't really explain the high pANCA, besp, since the PR3 and MPO were normal. She ran ANCA blood work and a urine sample.

    I told her that I had at least 5 rounds of antibiotics last year which resulted in me getting better for a few weeks, then getting sinus infections back. Finally, after a 2 weeks of antibiotics and prednisone, it cleared up. She said with Wegs, antibiotics don't work. If I get sick again, i should not take prednisone with the antibiotics, so she can see if the antibiotics work. fine, except I reminded her that the sinus infections would not clear up until the doc added prednisone to the mix. So I left confused.

    Results in a week. If ok, just follow up with her in September.
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    Alaskatom is offline Registered Member
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    In my case I had been treated with several antibiotics before GPA diagnosis, and had no improvement from the antibiotics. Pretty common story on here, as it turns out.

    What about your other lab work, such as your ESR and CRP. Maybe you've mentioned it already, but do those tests show that you have some widespread inflammation, or are they normal? I'm not quite clear on why GPA is a strong suspect for causing your problems? In any case, fingers crossed for helpful lab results and some resolution to the mystery.
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    MikeG-2012 is offline Diagnosed: April 2012
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    Quote Originally Posted by lovetoswim View Post
    I told her that I had at least 5 rounds of antibiotics last year which resulted in me getting better for a few weeks, then getting sinus infections back
    Without a proper culture of the sinus infection, to determine the proper antibiotic for the particular strain of bacteria, bombarding the body with random antibiotics does not work. Your ENT should be culturing every infection you get and looking at the pathology report to determine which antibiotic will work. The pathology reports my ENT gets always recommends the proper antibiotic. I'm on doxycycline right now for the infection I have going on.

    After 9 years of having bad ENTs prescribing boatloads of medications without culturing the infection, I would vehemently say, NEVER AGAIN!!!

    My ENT I have right now is a Rock Star!!!
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    MikeG-2012

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    Alaskatom is offline Registered Member
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    Absolutely. And after being treated with different antibiotics in rapid succession, as I was for my supposed ear infection, any culture is not going to be reliable. Not very helpful when one is acutely ill.

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    lovetoswim is offline Registered Member
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    Quote Originally Posted by Alaskatom View Post
    In my case I had been treated with several antibiotics before GPA diagnosis, and had no improvement from the antibiotics. Pretty common story on here, as it turns out.

    What about your other lab work, such as your ESR and CRP. Maybe you've mentioned it already, but do those tests show that you have some widespread inflammation, or are they normal? I'm not quite clear on why GPA is a strong suspect for causing your problems? In any case, fingers crossed for helpful lab results and some resolution to the mystery.
    Alaskatom, I don't see ESR and/or CRP on the blood work. What do those indicate?

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    lovetoswim is offline Registered Member
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    Quote Originally Posted by MikeG-2012 View Post
    Without a proper culture of the sinus infection, to determine the proper antibiotic for the particular strain of bacteria, bombarding the body with random antibiotics does not work. Your ENT should be culturing every infection you get and looking at the pathology report to determine which antibiotic will work. The pathology reports my ENT gets always recommends the proper antibiotic. I'm on doxycycline right now for the infection I have going on.

    After 9 years of having bad ENTs prescribing boatloads of medications without culturing the infection, I would vehemently say, NEVER AGAIN!!!

    My ENT I have right now is a Rock Star!!!
    Hi Mike, the ENT that I try to see whenever I have sinus issues is a sole practitioner and is very difficult to get an appointment with when one is sick. Consequently, I ran to urgent cares (especially since the worst was over the Christmas holiday season). When I finally got to see him, I'd already seen one quack ENT, and urgent care several times. My ENT did a culture and I got the appropriate treatment and it finally cleared up, however it took doxycycline and prednisone.

    That culture was a $500 test, covered by my insurance, but I doubt that everytime I see an ENT, they would do that culture. How often do you get sinus infections?

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    MikeG-2012's Avatar
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    I get infections probably 2-5 times a year. It is almost always staph. Each time it seems to be a different strain too.

    I understand that the tests are expensive, but what does it cost the insurance to have you go back for an office visit 3-4 times for the same infection? With this disease, EVERYTHING is complicated, and treatments and tests are going to cost insurance, and us patients, money. Sad to say, but when we have wegs, we are expensive!

    I have really good insurance and they pay for just about anything that I need. I am truly blessed to be working at this college. Without this job, and the insurance, I would have probably lost my house by now.
    MikeG-2012

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    Quote Originally Posted by lovetoswim View Post
    Hi Mike, the ENT that I try to see whenever I have sinus issues is a sole practitioner and is very difficult to get an appointment with when one is sick. Consequently, I ran to urgent cares (especially since the worst was over the Christmas holiday season). When I finally got to see him, I'd already seen one quack ENT, and urgent care several times. My ENT did a culture and I got the appropriate treatment and it finally cleared up, however it took doxycycline and prednisone.

    That culture was a $500 test, covered by my insurance, but I doubt that everytime I see an ENT, they would do that culture. How often do you get sinus infections?
    Wait until your insurance gets billed $40k for a two-dose course of rituximab. My doc had to get a pre-authorization (took about 10 days). After treatment, insurance paid about $8k and I paid a $20 copay for each dose. Hoping you're as fortunate as I.
    Pete
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    "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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    Alaskatom is offline Registered Member
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    ESR (sed rate) and CRP (c-reactive protein) are non-specific markers of inflammation. Elevated levels can mean different things, but they are standard tests in helping to diagnose and monitor GPA disease activity. Frankly I would be surprised if you have not had these tests, especially if you have been worked up for GPA by a rheumatologist. Others can chime in if their experience was different, but I think the initial standard workup when GPA is being considered is blood testing for ANCA, ESR, CRP, a chest CT to look for lung involvement, and a UA to check for renal involvement. A search of some of the reputable medical sites should help you, e.g. Johns Hopkins, Cleveland Clinic, Vasculitis Foundation....

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    Quote Originally Posted by Alaskatom View Post
    ESR (sed rate) and CRP (c-reactive protein) are non-specific markers of inflammation. Elevated levels can mean different things, but they are standard tests in helping to diagnose and monitor GPA disease activity. Frankly I would be surprised if you have not had these tests, especially if you have been worked up for GPA by a rheumatologist. Others can chime in if their experience was different, but I think the initial standard workup when GPA is being considered is blood testing for ANCA, ESR, CRP, a chest CT to look for lung involvement, and a UA to check for renal involvement. A search of some of the reputable medical sites should help you, e.g. Johns Hopkins, Cleveland Clinic, Vasculitis Foundation....
    My doc's orders also include a CBC and a comprehensive metabolic panel.
    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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