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Thread: Confused with pANCA test and doc recommendations

  1. #11
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    Hi Pete, what were your symptoms when you were very sick at the onset? While on medication, did you resume exercise?

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    Hi John, I don't have a doctor yet. Can I see a rheumy even if I haven't had a lung biopsy yet?

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    Quote Originally Posted by lovetoswim View Post
    Hi John, I don't have a doctor yet. Can I see a rheumy even if I haven't had a lung biopsy yet?
    What Doctor have you seen? Has anyone run ANCA blood work, SED rate or other diagnostic tests? I guess that what kind of Doctor you can visit will depend on your insurance or ability to pay.
    It is my understanding that Rheumatologists are the ones that diagnose and treat Wegener's Disease.

  4. #14
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    Hi Superswimmer!

    At disease onset, it began with a middle ear infection that did not respond to the usual treatment, followed in short order with what started as a persistent cough that morphed into a productive cough with a little blood in the sputum. I also had a marked loss of energy and appetite. As things progressed, I began having night sweats (2-3 each night that thoroughly soaked my pajamas and bed sheets). I spent a week in the hospital at Ohio State where I was eventually diagnosed by a process of elimination. Thus treatment began with 150 mg/day of cyclophosphamide, 60 mg/day of prednisone, and bactrim 3 times weekly.

    About a year in, my doctors switched my immunosuppressant to azathioprine (immuran). I had a very bad reaction to it resulting in pneumonia, hypotension (BP was 60/40 at one point), crushing fatigue, and persistent hiccups. This was much worse than disease onset as I pulled a ribcage muscle during one of my coughing spells. I went back to cyclophosphamide.

    It was at about this time that I found this forum. Shortly after, I self-referred my wegs care to Dr Alexandra Villa Forte at Cleveland Clinic. She switched me to methotrexate (15-20 mg/week) and began a slow prednisone taper (took over a year to get off it). I was on methotrexate for three years before the side effect of post-treatment fatigue got too annoying. Thus, the switch to annual treatments with rituximab.

    Between episodes, I was able to exercise. I started from being barely able to walk the hundred yards from my house to the nearest street corner, and I gradually progressed over a couple of months to being able to walk 3 miles in less than an hour. I did this indoors at the local YMCA and outdoors (weather permitting) 3-4 times a week.

    I began swimming again shortly after disease onset, but the cool water and lung damage (since healed) caused me to have asthma and extreme shortness of breath. So, I didn't try to swim again until a couple of years ago. Again, it was a very gradual process to build endurance. The first time I swam again, I did 2x50 yards and was exhausted - it felt like I was swimming in jello. I've progressed to being able to swim 5x200 yards in 25-30 minutes twice a week. I'll continue to work toward my goal of 1,500 yards non-stop.

    I've had to cut back on my walking because the sciatica from an old back injury has acted up. I walk 1-2 miles a couple of times a week. Chiropractic is helping, but I'm a better swimmer than walker.

    This has been a long way of saying yes you can exercise while taking wegs meds. Do as much as you can, but pay attention to what your body tells you.
    Last edited by Pete; 03-26-2017 at 03:21 AM.
    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

  5. #15
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    John, I saw an infectious disease doctor who ran all autoimmune tests as well. Had a high pANCA and Lymph node levels. Would a rheumatologist be the next step or a lung doctor for a lung biopsy?

  6. #16
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    Welcome, lovetoswim. Your scenario sounds a lot like mine before my dx, with the string of sinus infections and eventually lung issues... the one thing missing is the massive refractory ear infection that was my first big symptom, but still not taken as a clue of what I had. It did take lung involvement and a CT scan to show things in the lungs that made a doc suspect WG. About the same time, I noticed my saddle nose and went in to the same ENT who'd been treating me since the ear infection, and got a nasal biopsy on the spot, which was positive for WG. So, yes, you can get that biopsy without also getting sinus surgery, and I don't understand your ENT'S viewpoint. What you need to know is whether you have WG. Of course, you might need a lung biopsy, anyway, since nasal ones are often not conclusive. I was lucky mine was, and it was not nearly as big a deal as a lung biopsy, so I feel it would be worth taking the chance on that first. Just go to a different ENT, and I think Pete's suggestion of Dr. Merkel as a rheumy is very good, since it sounds like you live near him, and he can suggest an ENT if you're having trouble finding one, as well as a pulmy. The fact that you say you feel pretty good is encouraging that if you have WG, it may not have progressed as much as some of ours at dx, but without treatment it will likely get worse to where you want the drugs that will help you get it under control. I just realized I hadn't read all the posts including Pete's excellent one describing his history, and how well he's recovered and able to do so many things, including lots of swimming, and the same could be true of you if indeed you have WG and are proactive in dealing with it. Don't be afraid of the drugs, the sooner you start on them the better, and the sooner you'll be able to get off the worst of them. Good luck and keep us posted.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 03-26-2017 at 01:55 PM.
    Anne, dx'ed April 2011

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    You might want to see a whole team of Doctors, ENT, Pulmonary, Rheumatologist, Eye Doctor, your General Physician etc. depending on your symptoms

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    Nothing you've said indicates that a doctor has suggested a diagnosis of GPA? Certainly sounds like something is going on if you've had recurring symptoms for over a year, but has your doc said he suspects it? Standard workup would include chest CT, UA, ESR, CRP, in addition to checking for ANCA/ PR3.

    Nasal biopsies are quite often not diagnostic; a Google search of GPA research will tell you that. Others have had different experiences, but I submitted to a nasal biopsy and it only worsened my situation. My biopsy was negative, even though I had positive C-ANCA/PR3, very high ESR and CRP and strong clinical indicators of GPA. In retrospect, I regret not following advice suggesting that the biopsy was overkill, as it caused a massive increase in scarring and inflammation. Especially if you are feeling well, not sure why you would pursue invasive procedures? I'd be particularly careful of the "bundling" of nasal biopsy with some kind of sinus surgery, if what you are looking for is only a diagnostic test. Do they even do lung biopsies when a chest CT is clear?

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    To add to the biopsy question, an experienced WG doc may be able to conclude a dx without one and begin treatment, based on bloodwork, symptoms, etc. In my case, the nasal biopsy was easy and successful, but everyone​'s case is different. And I forgot to mention an easy biopsy of my swollen parotid gland was done at the same time and probably contributed to the conclusion. A biopsy can come from anywhere that suspicious symptoms exist, such as in some cases, inflamed and bleeding gums. Seeing a good rheumy such as Dr. Merkel would be a good start, and he could help you decide from biopsy options and where to go for them. If he works out of a teaching hospital, of which I'm not sure, there could be others on the staff available​ to address the various parts of your possible dx and treatment. Best of luck.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  10. #20
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    Thanks, Annekat, for the support and information. I also had a parotid gland infection last year but it was resolved with antibiotics. I will continue to look for an ENT who will do a nasal bippsy in my area, and will contact Merkel tomorrow, but I fear there will be a very long wait. Trying to get an appt with a lung doctor at Penn resulted in an appointment in July! That's just for a initial consult.

    This ENT who wanted to do the nasal surgery as well is not my regular ENT. My ENT that I love and trust, does not do nasal biopsies and recommended Penn or Jefferson.

    Do you recall what they found in your chest CT that showed possible WG?

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